Skip to main content

Family Time


We finally had a halfway decent night, at least for a couple of hours.  Sheesh, the days drag on and it's one hard day after another.   Shelbie continues to be sick.  This week her blood pressure has been crazy low...87/41.  I didn't even think a person could still be alive with a blood pressure that low.   Another week on antibiotics and there is no improvement.  Spencer had a metabolic crisis on Tuesday morning.  I had just walked in from a morning appointment he could hardly keep himself upright.  He had been at the gym working on a new weight routine and nearly passed out.  He came straight home.  you know its serious when HE knows he can't go on.  

It was a bit scary...like watching scaffolding crumble.  He was really struggling.  I ran to the gas station to get him some Gatorade Recovery and filled him up with sugar and starch. I knew if I took him to the hospital they would hydrate him and run a couple of bags of D5 and Sodium so I did a makeshift thing which I realize wasn't nearly as effective.  It took until the evening before he had any strength back.  Wednesday, he was doubled over much of the day with chest pain.   So, those two took a beating this week.

Early this evening, when everyone was laying around the living room grouchy, I announced that we weren't going to be grouchy anymore.  As if that would turn this ship around...but actually it worked.  Well, it worked after a smallish argument and meltdown.  After that, it was almost a perfect night. I made their favorite cookies, popped some popcorn and then we all curled up in blankets and watched the first two episodes of Planet Earth II.  No phones, no work, no worries...just relaxing and being content with one another.  You don't realize how healing it is to be with each other, doing something other than visiting doctors and work, until you go months without it.

This week, I'm hoping for the conference call with NIH geneticists.  As I understand it, they are close to completing their assessment of our Exome sequencing.  I'm bugged at the slow pace of our doctors in coming up with solutions for my kids. I want someone to explain what, if anything we need to do about the soft mass in Sam's brain and the prominent granuloma in Shelbie's.  Not to mention if Sam is a candidate for brain surgery.

I realized tonight that I might be in denial.  I have no clue how to parent in this situation.  I keep pushing them and kind of getting after them to get and be productive. I guess if I see them doing something and being busy then they must be doing okay.  Shelbie put me in my place tonight.  I bet we have that conversation every 2 or 3 months.  I don't think I have it in me to just let them give up the illusion of being 'Okay' or 'Normal'.  It's really starting to be a big problem.  I'm not sure how else to be.

For tonight, I'm going to sleep better after the little break we had together.  



Photobucket

Comments

Popular posts from this blog

Unknown

It has been an emotional weekend!  Holy Smokes.  I need a vacation from being sensitive.

It's been months since I have been able to find my homeless friend May.

Monday, I had this overwhelming feeling that she was in trouble and it dawned on me that I should call the apartment where she was last known to be.  They didn't answer.  They didn't answer my call all week!  Finally, yesterday (Friday) they called me back.  I was afraid that they wouldn't give me any information about May since I wasn't family so I lied!  I told them she was my great Aunt.  The manager hummed and hawed and finally gave the phone to a man who wondered what I wanted with her.  After some convincing, he told me that she had been arrested and taken to the State Mental Hospital.



I was so sad!  I immediately called the State Hospital and asked if I could speak to her but of course, they can't tell me if she is there or not...and, I couldn't remember her first, legal name.  She has sever…

Obscure Sorrows

I sat on the bench like I usually do on Saturday mornings, the organ music was slow and quiet.  I think that's why I like playing there; its just slow and quiet.  I set the pace.  I mostly keep my eye on the music for fear of messing up but I did notice a couple walk in.  I had known them a few years ago, not well, but enough.  Enough to notice each other and say Hi.  I had heard recently that she had breast cancer.  She's likely a good 10 years younger than me.  Her red wig was striking, her eyebrows carefully in place and by all accounts, she made cancer look good.  
I had the strangest feeling I've never had before.  She has no idea, that somehow, I know all about her recent strife with cancer.  I have heard how it struck, how she deals; I know more than a distant acquaintance like me should know.   She is living this complicated, unfair, story that went off in a way she scarcely expected.  For a moment, I felt like I was an extra in her 3rd act; the struggle.  And, I wo…

Wonder Woman...

It's been months of ongoing stress around here...that's nothing new but as a family, we use to be so good at unplugging from the hard times to escape into something resembling fun and not tragic. We haven't done that for a very long time, in fact, I can't really remember the last time.

On Tuesday, Shelbie announced that we needed to go to a movie.
"Like, right now?"  I asked
"Yes, why not?" She said
"Well, it's 11:30 in the morning?" as I said it, I was wondering if that was even a valid reason.  Who says you can only watch movies between the hours of 6 and 10 at night?  "I have a major interview tomorrow and presentation?  I should stay focused?"  I had all these reasons that I was trying to coax my head into believing and they weren't working.  "Ya know, that's a good idea, let's go!"

Really, it was the best decision.  I use to be spontaneous with the kids but then life happened, and kept happening. …