Tag Archives: family time

Of Breathing, Growing, And Being An Ambassador

Sometimes Chase remembers that things change as he grows and sometimes he doesn’t.  The last time he had a continuous EEG (the process of monitoring the working of his brain for hours on end), he was newly 4, six months off chemo, and his heart and body were both still deeply hospital weary.  He had to be wrapped and held and he screamed the whole time as the wires and goo covered his head, so when I told him on Monday that the time was coming again, he slumped down on the couch next to me.  “Mom, stop talking.  Please don’t say anything else.  I need to breathe.  No more talking… I need to breathe in and breathe out right now.”  And I sat half laughing and half broken that he’s 5 and yet he’s 107 for all of his experience.  

The awkward "can't-climb-into-the-hospital-bed-with-you" snuggle

The awkward “can’t-climb-into-the-hospital-bed-with-you” snuggle

In preparation, we wandered through Target last night and found a new movie and some popcorn because seizures can happen when you go from sleeping to waking and so he had to be able to sleep during the test, and as the kids sat on the old, blue leather couches and munched around giggles at WALL-E, there was another July EEG night on my heart.  One when Darcy and Aidan were still too young to stay up terribly late and Bob and I took turns napping and walking a two-year-old Chase around the block and at 10:30, when I simply couldn’t stand anymore Thomas the Tank Engine and decided to put him to bed, he lost his balance and fell, and my stomach turned, but many things can cause a fall and so we went to bed anyway…never knowing that it was less than 48 hours til we’d sleep in an ICU under the shadow of imminent surgery and tragic diagnosis.  I always think of that night come each July and it was my turn to breathe in and breathe out and remember that by the grace of God, that night wasn’t a minute past, but nearly three years ago.  

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Being perfectly still

This movie night lasted until 11:00 and the EEG day started at 5:00 and in moments like this, grace and coffee are my best friends.  By a mile down the road, it was time to find the nearest bathroom just because that’s what happens with 5-year-olds, and as we sat on the Eisenhower in the long lines of traffic, as soon as he saw the top of the Willis Tower, Chase pulled out his iPad and turned on 10,000 Reasons, because sighting the tower means he’s almost there.  Three years have nearly passed and this is still how he prepares for a hospital day.

Within minutes, we were there in the familiar rooms again and then came the moment he knew things had changed for he sat completely still while they put 21 brightly colored electrodes all over his skull and the only time he ever got cross was when I tried to make him laugh. IMG_1250  And I got to hold his hand and not hold him still.

Chase never relinquishes a fight and it took him until 5 hours into the test to fall asleep and that was 5…long…hours… of sitting in a bed with virtually no radius of movement unless a bathroom was absolutely necessary.

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Sleep finally wins

 

When the test was done, having mercifully lasted only 6.5 hours, he pulled some St. Baldrick’s brochures out of his pack.  They had his picture inside, his and Dr. Lulla’s, and to anyone who would stop, he gave a brochure and said “I’m an ambassador.”  And even though he doesn’t always give Dr. Lulla the time of day during clinic visits, to any and all who would listen, he would explain and point, saying “This is Dr. Lulla and he’s my favorite doctor in the whole world.”  He even stopped a security guard and somehow managed to encourage him to shave his head next year, and it was a precious moment of conversation and meeting, because if I’ve said it once, I’ve said it here a dozen times…this is how Chase rolls.  And I wish you could have seen the tall security guard fold down and give tiny Chase a big hug.  Those are the good moments to breathe in.

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Chase and his “favorite doctor in the whole world”

And now Chase has learned that things change as he grows and what was hard a year ago wasn’t very hard at all anymore, though the sitting still and his mom trying to make him laugh at inopportune moments will probably remain trials for many years to come.  

For now we await results.  No matter what comes of this, we’ll breathe in, breathe out, and take it…

Moment by moment.

A Slice of Our Holiday

As promised, I updated our Memorial Day pictures this weekend.  Hey!  In my defense … I remembered yesterday that we didn’t have pictures from last year because we were in the middle of a cross-country marathon drive.  I’ll have to tell that story another time … I’ll also have to figure out my excuses for the other three years not having pictures at a later date as well.

We started out our morning with a parade…

And, the “A++ Father Award for Standing in The Hot Sun On a Parade Route” goes to … my husband!  I say this because I was over here for about 98.5% of the morning …

…sitting on the step of a dentist’s office in the shade of the building right behind Bob the whole time.   PS: I wish I could tell you why Aidan makes that face at the camera, but I can’t, because I don’t know why.  I think my two year old is officially “too cool for school” … or the camera … whichever the case may be.

A funny thing about my family …

We love to cheer on a parade.  Side note: look at my prim and proper mother with her backwards hat!  I have no idea why it’s like that in this picture, but I’m sure she’ll die just a tiny bit when she sees it.

Anyway, we love to cheer a parade!  Please notice my dad’s wide open mouth … he spends a large amount of any parade we attend calling out to the participants.  There’s one parade we attend every year where we’ve started noticing that the same people sit by us year after year.  I think it’s because my father is almost as entertaining as the parade.  When we were younger, he’d call out and cheer to all the church and school kids we knew in the marching bands, etc.  Now, he calls out to people he knows from the city … everyone from the mayor to the marching veteran whose coffee he pours at Starbuck’s and recognizes by name.  We laugh and it’s entertaining, but my dad has a great gift for making people feel special, even those he doesn’t know … as evidenced in this picture: he’s calling out to the flute players and telling them what a great job they’re doing.  True story.  He often calls out to the parents marching alongside the groups and bands with “Way to go, PARENTS!  You guys make it happen!!”  I love my dad.

We finally got out of the heat for an awesome lunch that included an addictive spinach salad (a recipe I WILL be posting in the future) and then a little of this …

I’ll just let this picture speak for itself.  Powerful in it’s total lack of action, right?

After a little siesta, we let the kids hang out in the sprinkler.  I should just preface this by saying … I LOVE these pictures!  I love them so much that I drool over them a little every time I look at them.  Okay, I’m done.

Side note: THIS is why you cloth diaper.  Green, Schmeen … do it for the awesome pictures of your babies’ little bums in adorable colors, that’s why.

If this picture had sound, you’d hear Darcy and Aidan laughing while Chase shrieks at the top of his lungs while clapping his hands.

Try as they might, the kids could no longer be patient after a while and so it was time for dessert … and by “kids“, I may mean “adults“, and by “dessert” I definitely mean “s’mores” … oh, yes.  However, the kids (the real kids) aren’t big on s’mores yet (yes, I know, something is genetically wrong) so they got ice cream cones.  Which probably made for better pictures anyway …

Not one to do things by half, my youngest ignored the “licking” concept and moved into the more intense ice cream consumption phase of trying to put the whole cone into his mouth.

Which didn’t really pay off as he ended up with more ON him then in him …

Please note the totally hair-tastic look of this child.  Gracious, he’s going to hate this picture some day!  However, for his mother, it will always be a work of art.

Hope you all made the most of your day and enjoyed it!

Have a funny Memorial day story or pic?  Feel free to post it below!