October 19, 2015

Last week on a Tuesday Night we decided to go to Cornbelly's.

But first lets talk about life.
Life lately has been pretty unfair.
I've once again been spending my life in the doctor's office, and the hospital and the lab with a kid.
But what makes it even worse is that it is with the only kid I have that doesn't have chronic health conditions.  Or didn't.   But now does. Now Marianne seems to have joined the ranks with Kate, Sam and Bethany.  Autoimmune issues plus something called Loose Anagen Syndrome, which basically means her hair is going to fall out.  Maybe.   All of it.  Maybe.  She has lost about 80% of it in the last 7 months.
But nobody knows anything really.
Especially doctors.
But we are a unique case.  Of course we are.  We can't even have classic cases of our weird never heard of diseases.  We have to have the weird, "I've never seen this before" cases of the never heard of diseases at our house.

We have some treatments to do, and a new allergy free diet that might help.  But most likely, my beautiful Marianne, will loose her hair, and it might be because she has other underlying health issues yet to be discovered.   And that has been crushing.  soul crushing.  hope crushing.  Not because it is hair, not because she has to be different.
But because I have seen how chronic health issues take away a little piece of the care free happiness my kids use to have.  And Marianne is so great at being care free and happy.  She is kind of all the care free and happy for our whole family.

Also because now I have four children who each have some chronic health condition I get to worry about for the rest of their lives.  When I had three kids with chronic health issues, I still had my Marianne.  She gave me hope, that someday I might have even two healthy kids.  Her health never kept me up until 3am.  But the odds just are not in our favor.
 Almost ever.
So now despite the happy hopeful no big deal attitude I try to have.
I'm up all night now.  Reading the  entire internet again.  And making perfect Paleo meals for a family of six. And worrying.  And feeling let down. And loosing hope that one day we can just be like all the other normal families who don't weigh risk factors every time their kid eats something  Normal families who get over illnesses and don't have compromised immune systems that mean a cold or a flu or heaven forbid strep end up costing us about two months of our lives and about $6000. Normal families who somehow get to move up Maslow's Hierarchy of Needs to things like self actualization instead of being stuck and staying alive- or whatever the very bottom one is labeled
.
Yep it is a pity party for sure over here.  And really what is a party with out cake, and we can't even eat cake so it is the most pathetic pity party ever.

But last Tuesday we went to Cornbellys.  We went to Cornbellys and there was a giant Minion and trampolines to jump on and things to climb and corn kernels to swim and hay rides and puppet shows and princess gardens and swings  and pleasant happy children and we stayed out way to late and I convinced Kate and Sam to come in the spooky dinosaur with me and we felt normal for a whole entire three hours.    The perfect fall weather was just that.  And I think I cried a little on the way home about how perfect three hours were.  We ate dinner at 8:30 at night because our kids were having so much fun and didn't go to bed until almost ten even though it was a school night and I wish every day could just be that day.