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Laboratory for the living

This has been a whirlwind of a week, I mean, a little more whirlish than normal.

First, I wanted to provide an update on the kids.  Especially a Salmonella update.

Spencer seems to have cleared all bacteria that plagued him for weeks. Not a day goes by that I don't feel gratitude that he survived that ordeal.  I know to some, that seems odd to say but for someone without a working immune system to get such a toxic bacteria, his recovery is nothing short of a miracle.  Now, he is facing the fallout and working on healing and gaining weight.   The Salmonella bacteria destroys the part of the gut that processes carbohydrates.  He was already having issues with proteins and was on a water soluble diet due to the progression of his disease, so now, we are in a bind.  Of course, he is back in Utah, working and so I can only trust that is managing to find something that settles in his stomach.  From my last report, he has gained 1 pound!  I'm not sure that is real weight, maybe a water shift but we'll see.

For Spencer, finding his way in this adult world is challenging.  It's been hard for him to admit that there are some things he just can't do anymore.  I appreciate his effort to be patient with himself as he figures things out.

Shelbie is not bouncing back from her back injury earlier this week.  Yesterday, I tried taking her to the city so we could run some errands and just trying to walk and stand, she went numb from the waist down her legs.  The doctor said if this ever happened, they would need to MRI her and find out what those disks are doing.  I suspect we will be having to get to this next week.

Sam is pretty healthy.  I notice he is extremely tired these days but other than that, healthy!  He is in that very hard stage of life when high school is ending and what comes next has yet to be determined.  It hit me yesterday as I went to pay for his cap and gown and get his tassle that this is it for us!  How did time get away from me like that?

The word for the week is HARD.

For me, it's been a hard week.  It's been hard to focus and hard to get things done at work. I've had to have some hard conversations and share more of my life with people than I have ever wanted to.  I was grilled about how I mother, how I handle certain issues that come up with teens, how we manage school and teenage jobs and discipline.  I always feel like we are totally normal, everyday people.  I don't stray very far into the world so I never pay attention to how different we really are until you have to start explaining yourself to total strangers.

It's then, that I realize we are so weird.  We stand in a much different place than most of the world. Dyskeratosis Congenita and the fact that my kids are existing on borrowed time, or so it feels changes how we deal with life.  Things like school and jobs have very little significance to me.  Following along the acceptable timeline of life is not for us.  We have had to improvise on everything, even how the kids have obtained an education. When someone suggests I need to be more rigid and set up boundaries, I don't even know what that would look like.

Sometimes, it is just easier to retreat than to defend our way of life.  Ya, we have lived a different kind of life but all things considered, we've done pretty good for ourselves.  Our home is a laboratory where we are learning to live, not waiting to die.  We experiment and what works for one, doesn't work for another.  The rules change.  We change.  We are figuring this out as we go.  I find that by the time you worry about how to do life right, you're doing's done.



  1. You are an amazing mom. Your kids came with a lot of awesome, but the people they are is the proof in the pudding--you are doing fabulously.


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