Stages of Mourning

I've always found it interesting how differently people cope with death and loss, and now I find myself doing just that.  I am trying to cope with a huge loss of normalcy and to regain some footing in this new and scary world.  Yesterday it was confirmed that our oldest daughter has PMLE (Polymorphic light eruption- sun allergy).  Yes, sun allergy... so now we have to learn how to keep her healthy and still allow her to be a child and have a childhood.  Two very complicated tasks that seem to be mutually exclusive.  Though technically no one is dead, or even going to die, I am definitely struggling with the diagnosis.  Just when we got a handle on things with our youngest rare medical condition this happens.  There is just no simple way about it.

Stage 1: Denial and Isolation- about three weeks ago we were told she probably had PMLE but that it could have also been a number of other things and so we were hopeful (in denial).  I knew deep in my gut that it was PMLE causing her to have a horrible red itchy rash, but I completely tried to believe it could be something else.  Isolation is something I cant handle since by nature I'm a fairly social person.  And how do you explain to people that you have two children with unrelated conditions but that both conditions leave them unable to play outside in the heat and sun?  Its just not so simple and people can be so cruel.  It is my experience that when initially faced with these challenges it is best to withdraw.

Stage 2: Anger- I'm down right pissed off about all of this and I don't even know if I have the right to be.  It's the hardest thing right now.  I want my children to just be normal and run around in a sprinkler without all kinds of preventive measures taking place before hand.  I want my oldest child to be able to wear her favorite dress and ride her bike.  I don't want them to have to listen to their mom helplessly try to answer strangers stupid questions or have to deal with the stares.  So yes, Im angry... I guess this is where Im at right now.  I think I am somewhat quickly progressing while other family members and still in denial and this is all the more frustrating!

Stage 3: Bargaining... I hope to skip this step as there is nothing I can do to change this

Stage 4: Depression- sometimes all we really need is a hug... but I'm not a hugger so please don't touch me

Stage 5: Acceptance- I know I can learn to accept this for what it is.  I can accept the fact that A has mastocytosis than surely I can make sense of this PMLE too...

You may be wondering what is PMLE so here is a simple explanation with NO medical jargon.  PMLE is a sun allergy, not a sunburn.  The immune system is activated to attack itself when exposed to UVA or UVB rays and in some people both rays cause the reaction.  The exposure does not have to be long or be direct sunlight for this reaction to occur within the body.  The reaction starts immediately but does not show up on the skin for usually one to two hours after sun exposure.  The rash can be hives, small red patches, or red itchy areas that cover most or all of the sun exposed area... in more severe cases it can appear even under clothing.  D is somewhere between moderate to severe, as she does have the rash on non exposed areas.  It can be managed by using physician strength sunblock, UPF clothing AND limiting sun exposure.  The rash is intensely itchy and once it appears it can take days to a week or more to resolve.