Thursday, January 02, 2014

Chronic Illness: The Kids

I've been thinking about this post for a while, pretty much since we figured out that what Bridget has is long term and it affects our whole family.

I don't know if I can properly hit the right tone with how this affects us.  Bridget has a chronic illness, but the long term prognosis for her health is very good. This is not cancer.  It is a manageable respiratory problem.  But it appears likely that we are going to be hospitalized frequently.  The doctor rumor mill has suggested that our pulmonologist has already squashed the idea of home oxygen.  Squashed it and decapitated it like a mole under Fred's furry paws.

So it's not cancer, which is a whole other level of hell. Nonetheless, it's still very disruptive and stressful for the whole family.  Since Thanksgiving, Conor has been seriously worried about Bridget having to stay in the hospital on Christmas Eve. I mean, seriously worried.  We assured him that Santa would find Bridget if she was in the hospital.  As an aside, the nurses and docs shared that it WAS PACKED here on Christmas Eve.  Kids were shooting up from ER (or the "ED" as we who are Silver Elite know to call it) until the floor was full and they were putting kids in the observation room.  Fortunately, Santa did find all these children and their families and was extremely generous to them, a fact which still makes me teary.  (Thank you, Hemby Children's Hospital Elves who made that happen)

One afternoon this fall, on the way back from the bus stop, I told Conor that although Bridget has lung problems but she isn't going to die.  He let out a huge sigh, and said "OH GOOD!  I didn't know." That floored me.  When he comes to visit in the hospital and her alarm goes off, he moans, jumps up, and shouts out the number. At home, when we are monitoring her oxygen he gets upset at low numbers.  Even the kids' best friend and neighbor, A, gets upset when she sees low numbers***.

While Conor can at least express fears about Bridget, Christopher is all over the place emotionally.  He alternates from being incredibly smoochy to incredibly angry.  Christopher is not a bad kid.  But he does feel more deeply than most children.  We try to be as sensitive to him as he is to his surroundings.  I'll tell you what, though: that kid can hold a grudge.  Don't cross him because he'll still bring it up years from now. He really misses Bridget and me when we're in the hospital and he shows it by clinging to and ignoring us.  He's kind of a like a cat.  If I come home and find he's peed in my gym bag, I won't be too surprised.  

On our admission night, it was the first time I've ever seen Bridget have some adult emotions about what is going on to her.  She and I had been talking about and really hoping to stay out of the hospital.  The night she was admitted she was very stoic and very tired.  When we finally got to our room, she wanted to potty before she got into bed.  We went in together and shut the door.  It was the first time she had any privacy since we'd gotten to the ER (ED!  Ha!  We're insiders! Um.  Yuck.  We're insiders)

She got very quiet and whispered, "I hope.  I hope.  I hope Daddy comes to see me tomorrow." Her face turned red, she grimaced, her eyes closed and tiny, tiny tears came out of her eyes.  She has never cried about being here.  The only time she cried during a needle stick was when they took a arterial blood gas measure (which makes adults cry).  She looked very much like a tiny adult trying to deal with some real shit.  I gave her a big, big hug until she squeaked "You're hugging me too tight!  I can't pee!!"  And just like an adult who wants to cut a highly emotional moment, she made us both laugh.

That squirrel blows me away.

***Noting that Conor was starting to "take responsibility" for Bridget.  We have had several talks (our own instinct and coached by my colleagues) stressing that it's ok to be upset and concerned but that Daddy and I will ALWAYS take care of Bridget.  We are on top of this, and he can be worried, but he should be a kid.  It works, but we have to keep reminding him.  He's an incredibly empathetic kid.

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