Tuesday, March 26, 2013

03.26.2013 -- A Rough Patch and the Magic Circle

This past week has been an interesting one.  With most of us being sick and a cold snap that has made playing outside a no go, it has taxed our patience.  I was really hoping that yesterday would be the end of it, but it wasn't quite.

When Gabe woke up with a cough Tuesday morning, I had to take his requests to go to the "dentist" (doctor) more seriously.  He had a sore throat, he said, and wanted the dentist to help him to feel better.  I took him to the doctor, only to have the doc tell us that there was nothing that he could do to help with what he thought was adenovirus.

Not fun. It certainly could be lots worse, but it has been a lot of work this past week, trying to recover and trying to keep the kids rested and happy. 

Thursday, Lucy started to have headaches.  She called from school to say that it felt that like her shunt had broken and water was on her scalp.  It was pretty easy to get someone to look at her head to see if everything was still intact.  It was.  She asked a ground duty to look at it for her.  I asked if she had known that Lucy had a shunt.  Lucy said, "No. She thought it was a goose egg!"  She almost giggled when she told me that part after school. She called again a little later from school to say that she had a headache.  They came and went.  I chalked it up to the beginning of the adenovirus that we have been sharing around.

This whole adventure with hydrocephalus is slowly morphing into a scene where Lucy is becoming a central figure with a voice.  It's a nice change.  When she was a baby, we were just guessing at what she felt.

When the importance of Lucy's own recollection of her symptoms became obvious to me, I went to our stack of notebooks (okay, so "stack" might be too "neat" of a word to describe our stash of coloring books, activity books and notebooks) and pulled out a small notebook that still had some pages left relatively untouched.  I gave it to Lucy, strapped on her watch, and explained how she could keep track of her headaches and stomachaches so we could give more information to Dr. Walker.  There was no ceremony, but it did feel a little like a rite of passage.

With a lot of support from an especially savvy health care consultant (my sister-in-law),  I got on the phone and got an appointment with Lucy's neurosurgeon for today.  It was easy, but I did get lost on hold for 15 minutes.  I just needed a little encouragement.

Anyone who has been to camp as a kid has probably seen the trust-building exercise where a big group crowds together facing the same direction in a circle.  Then, of course, they've got to get very close or it won't work.  If the group gets close enough that each person is effectively sandwiched between the persons in front and behind him or her, standing with the same shoulder inside, everyone can sit at the same time.  It's a self-supporting circle.  Everyone has a seat, but there's no beginning and no end.

It takes commitment and a little bit of balance, but it works well every time, provided that the circle is big and close enough.

Yesterday, a friend of mine texted me and sneeked (YES sneeked!) it out of me that I was going through a rough patch.  I was physically, mentally, and emotionally drained.  It was nothing I haven't felt before.  I and our family would have survived without intervention.  Still, it was so nice when she brought over her magical cough syrup  and dinner.

When I got a chance to help out my niece yesterday afternoon, it improved my day just as much.  I went from feeling tired and stuck to energized and motivated.  Really and truly.  It was nothing big.  I just gave her a ride.  Anyone could've done it.  But it was something she couldn't do for herself.  It provided her a little bit of support and eased the way a little.

I think this is the way the world is meant to work.  When we all do just a small something for somebody else, it's possible for all of us to get a little extra support.  A lot of times, that little extra that we do for somebody else makes a big difference for both parties.  

**Update:  Brian took Lucy to get a CAT scan and  shunt series today while I stayed at home with the boys.  Charlie woke up with a fever and was pretty miserable.  When given the choice, Lucy asked Brian to take her--she's such a daddy's girl!  Dr. Walker adjusted the setting on her valve to 110 from 100,  making the shunt drain more slowly.  We hope that this will make a difference for Lucy along with some time lying flat on her back after school to give her a break from all of the activity of school.  We will give it three months and re-evaluate.                                

Friday, March 8, 2013

03.08.2013 -- In a Nutshell

Charlie almost always has something on his face these days.

                         LBB (Lucy before braces.)                                      LAB

Gabe and one of his cute girl friends.

With Grandma's bird, "Blue."

Waiting for Lucy's first recital to start.