Let’s say six months ago there was a meeting of people in the same boat as our family finds itself.
A group of people who deal with immune deficiency in one way or another
and we couldn’t go.
Ivy was in the hospital at the time.
I’m not a part of that group any more.
What happened was a cascade of events, which, true or not, filtered down to me in the small hospital room
and it hurt.
Rational is not a word I would use for myself when I feel as though my family is being attacked or judged,
so, I had words with the people involved, which included a person who I had considered my friend and Ivy’s then immunologist.
I also lost the proverbial plot all over the internet – mostly within the two online forums where those involved presided
and then I left them.
I lost a community and some people I had become close to and cared about
but in the end, I couldn’t deal with the drama.
I burned bridges.
Groups like that can become a place of one-up-man-ship.
“My kid’s sicker than your kid” mentality
“you have it easier because it’s your child who is ill and not you ” kind of stuff.
One person even proclaimed that sick kids “get more” because they’re cute.
Things I’m not interested in.
Things that are exhausting when there is already so much to deal with in this world.
The head of the group said I needed to give the main person, who had caused my upset, a break because her child was staring down the face of a lung transplant.
Maybe I should have
but she didn’t give me a break when she was stabbing me in the back in a place where I was unable to defend myself or my family
because I was in the hospital with my septic daughter.
I guess in the world of immune deficiency, to quote another member of the group ”sepsis is nothing – everybody has been septic and survived”.
Hindsight is a wonderful thing.
I should have been the bigger person, I suppose but even if I had have been, I wouldn’t be able to trust them again
and besides that – something like immune deficiency and how ill your child is because of it
is in no way a competition.
Regardless of what kind of PID or the severity of it
we should all be in it together, supporting each other through the similarities and challenges of the disease.
The other day, after a mother had mentioned how sick her baby had been with a Summer cold,
another person turned to me and said;
“you must get really sick of people complaining about frivolous things like the snuffles”.
To which I had no answer at the time
but I’ve thought about it a lot over the last couple of days and I want to say
that it doesn’t matter what kind of sick your baby is.
Sick is sick.
Whether it be a cold or something else,
it’s all hard
If the child is unwell, the family feels it.
The parents worry
and that is a perfectly normal emotion to have when your baby is sick.
I don’t feel as though others have no right to be anxious about their children’s health just because Ivy struggles with her own.
All I feel is sad and sorry for the child and the parents, that they have to endure that period of time when all is not right with their world.
Sick is sick.
It’s not a competition.
The only winner in all of this would be a healthy, happy child.