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May 20

Nobody said it would be easy

Although for a long, long time, it was.  We were broke, all the time, and we struggled with scheduling and had only one car.  Our place was too small, and the kids were everywhere, and there was SO.MUCH.STUFF.

But even with that, I still knew that we were ridiculously lucky.  All of the kids were healthy, we were healthy.  Things were easy.  We loved each other, loved the kids, and looking back now, it all seems so much more idyllic than it really was.

It’s been a hard month or so, dealing with Jessie’s celiac diagnosis.  I’m still waiting for Sam’s blood results, and we’ve gotten it confirmed that Julie does not have celiac disease now.  She does have the genetic markers, so we’ll add on a celiac test every time she does bloodwork, and keep an eye on her for symptoms.

Jessie’s struggling, hard.  The first few weeks without gluten were brutal.  She was sick and lethargic, unbelievably miserable.  Combining that with the end of the year rigamarole that comes with being a high school freshman in an academically advanced program was… it was hard.  Then there were three glorious days, where she suddenly felt good.  Had energy.  We’d found snacks and foods that she liked, and were gradually getting used to the new reality.

Then she got sick.  She went to a USY convention for the weekend, and came home with a vicious cold.  And it’s been downhill ever since.  It’s like the last straw for my poor girl.  She’s lost so much, the ability to eat anything, to grab something quick at the store.  She can’t just go anywhere, any restaurant choice has to be debated and questioned, and even then, it’s not going to taste as good as it would have if she didn’t have celiac disease.  We went to Chik Fil A yesterday, because it’s the only fast food establishment, and she ate the grilled chicken, but missed the normal nuggets.  Then we went to Five Guys (another one of the only restaurants that she can go to easily), and that was just… yuck.  A greasy burger wrapped in lettuce.  All little things, and she could roll with it – but she feels so sick from the cold and the coughing and the fact that she can’t eat, just eat, without it being a production all the time….

And Julie’s caught the cold now, plus Sam is sleeping constantly, and Marc’s working seventy or eighty hours a week – and I’m just worn out from the past month of trying to adjust to having one kid with a disability and anxiety, and another one now with a chronic auto immune disorder that affects everything she eats for the rest of her life.

It’s May – and the end of the year.  The girls are sick of going to school, and I’m even more sick of sending them.  Sam and I are still trudging thru homeschooling, and it’s going well – but it’s also hard to keep cramming in the time in between appointments and school trips and sickness.

This is a hard time for us.  It’s just a hard time.  It happens.  Sometimes it happens and it’s awful, and your son is in excruciating pain and losing his sight, and the doctor’s don’t know why and there’s no easy answers and it’s impossible to see how this turns out okay.  This isn’t that bad.  I can see how this comes out okay.   We’ll adjust to this.  She’ll adjust to this.  It’ll be okay.  It’ll be second nature soon.

But right now?  It sucks.

 

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