La La How The Life Goes On

Archive for July 2012

That’s the theme of the summer here at Chez Jones.

We are on vacation at a lake house, and it is divine. The first couple of nights were not so much fun, trying to get the kids to sleep in a strange house, strange beds, on time and under budget. Then yesterday we just decided we were expecting too much. Like, this is VACATION. Does Baby Sister really need to be in bed at 7:30 on the dot? Does she really need to be well-rested to swim and make sand castles? And so we now have the most lax rules these girls have ever experienced, as evidenced by the Meeting-the-Beatles hysteria our “Pick Your Own Bedtime ‘Cause It’s Vacation” announcement engendered. Best part? They went to bed laaaaaate, but absolutely without fuss and in a shut-eye instant. I’m writing this because–in an unprecedented turn of events–Baby Sister is still asleep after the sun has risen. Huzzah!

We are managing expectations for Bambina and her ongoing swimming situation. Baby Sister, I’m certain, came out of her mother swimming. She is a natural, a fish, with zero concern for water up noses, in eyes or sand in bum cracks. She is That Kid (that I never was). Bambina, to review, has always hated the water with a passion. She used to cry every week when her preschool went to the pool to get lessons. She would avoid swim parties. She just flat-out didn’t enjoy the water. We went to the Cape a couple of years ago and ended up at a kettle pond, where she spent hours and hours cavorting in the water with her friend. Why? Because there were no waves and no mental commitment required to jump into a 4 foot-deep pool. She just walked in of her own accord and felt comfortable. So we decided that, at 8 years old, Bambina just finally had to learn how to swim. Or, as I call it, Not Drown. That’s all I care about. The girl just needs to learn to not drown. I don’t care if she ever dives, does laps, or knows who Ryan Lochte is for a minute. She just needs to know how to not drown. So we got her lessons at the local lake. Which she did very well…with a noodle. And now she will not relinquish the noodle. Bambina can swim. I have seen her do it. But some part of her brain refuses to let her believe that she will be safe without the damn noodle. And so we have The Constant Noodle, her ability be damned. As with all things Bambina, it comes down to her being ready. Her wonderful preschool teacher said, “Bambina will do things when she is ready, and not one minute before. Just know that we will prep her and get her ready-and she will do it–but we will never be able to force her.” And she was RIGHT ON THE MONEY. This is Bambina’s process and we have decided to respect it (key to which is avoiding the urge to compare her to Baby Sister).

Bambina could ride her bike without training wheels 6 months before she officially allowed us to let go of the back of her bike seat (even though we hadn’t been holding on at all for quite some time). And now she is a scary-good bike rider who won’t be held back. She always had terrible anxiety about being in front of people, and now performs in 3 or 4 community theater shows a year, with absolute joy and gusto. In every case, she has met all of her goals—on her own time. So even though I set this summer as The Summer Bambina Will Pass a Swim Test, I’ve decided that I’m going to let that happen when it happens. As her preschool teacher said back in the day, “Bambina meets every goal she sets for herself. It would be more worrying if she didn’t. But she does, and so let’s not interfere by putting our expectations of timing on her.” Best advice I ever received, and I’m still using it 4 years later.

In health news, my GVHD came back (if it was ever gone). Not too bad, just some joint pain in my hands and fingers with a little sclerotic skin situation, but I’m back on a decent dose of prednisone for a short time. Blargh. Which has reminded me to stop looking at my GVHD as something that I conquer, and rather more like a chronic condition I manage. If I keep thinking I Shall Vanquish Ye Olde Graft Versus Host Disease! Release the Hounds! I’m going to go into a shit-spiral every time it flares. But if I just accept that the on-again, off-again appearance of it is now part of my life, I can just be zen about its unwelcome darkening of my doorstep from time to time. I can hold onto my Fat Pants, wear them for the time I have to wear them, then put them away again when I’m back off the prednisone. It’s too much drama to constantly be thinking I’m CURED! only to find out I’m not ever going to be cured, normal or Back To My Old Self. I’m alive, I’m relatively healthy, I’m able to function semi-normally, I’m happy. I won’t be running 5Ks or walking 15 milers. I won’t be suntanning on the beach or playing pick-up basketball. There is a veritable laundry list of things I won’t be doing ever again as a result of the post-transplant complications. But hello? I’m here. I’ve got the Baby Daddy and my two girls. I’ve got my family and friends who modify plans so I can come along without spending 5 hours in the sun, or having to walk 4 miles, getting in a public pool, or having to eat sushi. Two people at my photopheresis appointments (it’s like dialysis for my blood, to control the insane white cells that are causing the GVHD) said that I don’t look like I am a patient at all. I know I’m lucky in more ways than I can blog about, even with the use of unlimited swear words. And the final, key element of maintaining that gratitude and positivity is to manage my expectations about GVH and its role in my life. GVHD is the drunk uncle or the junkie sister in my post-transplant life. That shit is just going to keep coming around whenever it needs a place to flop or wants to interest me in an unbelievable investment opportunity through a guy it met at a local bar. It’s going to need a loan here and there, and it will definitely try my patience before I manage to kick it out yet again. It is, for better or worse, here to stay, and I can either fall on the floor wailing when the doorbell rings, or I can just say, “Come on in” and then make sure to count the silverware until it leaves for Tuscaloosa with a redneck in a pickup truck.

They say that if you want a happy ending it all depends on where you end your story. This summer I’m reminding myself that no one’s story is ever over. Bambina either Can’t Swim, or she just hasn’t reached that chapter yet. I am either a fattie again, or I just haven’t reached the non-prednisone back-to-my-old-self chapter yet. All of our lives–minutes, hours, days, even–are still being written; this summer I’m working on letting go of the pen a little and just being open to seeing what ends up on the page.


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