Re-take

Ok, so I just re-read my last post, and yikes! The lesson is never write an entry at 4 am when you can't sleep the morning of a friend's funeral.  Seriously, you can't account for your brain, so do laundry instead.

Lots of backstory, but I'll sum up.  To begin, kids in YoYo's preschool class take turns going to the restroom.  YoYo has begun asking if he can go, too.  Currently, I pick him up at the end of four hours (school goes for 5 hrs.) to get him home in time to cath.  His teachers remembered my mention of reconstructive surgery a while back and wondered if he's be able to join the potty rotation soon.  Nothing wrong with asking that.  Exstrophy is largely correctable for many children--YoYo's an exception at this point.  But it threw me for a loop, and this is where having YoYo in preschool is helpful, because I can work through these things a step at a time.

YoYo knows he's different, but until now, he's always been surrounded by kids with medical needs.  His curiosity about others is growing.  I love every little inch of this squirmy boy, but I wish there was an easier way for him.  

Then last weekend, a friend from our Sunday School class died suddenly and tragically.  He was so excited about us getting YoYo.  When our class descended on our house, he and our realtor installed the pocket door to our laundry room and went a little crazy with redos.  I was told later the only reason they didn't rip up and redo the entire laundry room floor was my freezer full of half a cow.  When neighborhood kids were desperately nosy about what was going on at our house, Mike B. made them a bicycle ramp of scrap plywood.  They'd completely trashed it within two weeks, and he just laughed with delight.  We drove to Memphis for his funeral yesterday.

So I was a little distracted when I last posted.

This weekend will mark YoYo's first Lunar New Year with us--we're hoping to squeeze in to the Greater Nashville Chinese Association New Year Festival.  It's the Year of the Ox, y'all!

This is from my sister's baby shower, but its pink and red, colors for happiness, felt Chinese New Year festive to me.  These hung from the ceiling til the party ended, and YoYo dragged them around and danced with them for half an hour while we cleaned up.  

 

Kudos, sighs, and snippets

When we met YoYo, he slept with a catheter taped into the port in his side, and it drained to a small bag. Someday I may know why China has convenient tiny drain bags and America only has huge ones, but probably not. Anyway, when 4 out of the first 5 American bags pulled the cath out of our boy in the middle of the night and left puddles on the carpet and bed, it was time for a new system. 

So I stay up. YoYo has to be cathed every 4 hours, and though it slows at night, he still needs a cath somewhere in there. I do it around 2 am and again at 8. It was beginning to wear on me--I couldn't go to sleep and set an alarm, because I didn't want to wake Shane & I was afraid I'd sleep through. That sounds pitiful, especially when you read Superwoman's feats at gourfamilyadoption.blogspot.com. But I'd roll over at 8 am and think, "Can't do it." I'd do it-I was just beginning to feel a little overwhelmed. In the meantime, I was worried I was holding him back, because we're only doing 3-4 caths in the bathroom weekly--the rest are on his changing table.

Then we saw Dr. John Brock last week-YoYo's urologist. He did an ultrasound and checked urine. Turns out, he thinks we're doing a good job-the urine counts show we're cathing often and taking our time. He doesn't want me to rush the bathroom-the changing table is ok. AAAANNNNDD...YoYo's gaining weight! He's up to 30 lbs. now from the 23 he weighed in June. Sure, some 2T stuff still hangs tentlike on him, but we're moving along, and my fears of bone density and nutritional problems are fading. It's amazing how a little Dr. visit can kickstart your attitude.

I think one of the hard things has been that people have asked what can be done to "fix" YoYo or to make him "better." It's not a bad or wrong question to ask. It is hard to hear, however, that if we just keep praying, God can work a miracle that will astound the doctors and mend YoYo's body.

Now PLEASE do not read this and think you've done something wrong if you've thought or said anything like that; likewise, I hope you can afford grace to not judge anyone who HAS asked that. I would have done the VERY SAME thing before adopting YoYo. Part of loving one another, I think, is being free enough to not be afraid to ask those questions or to hope past what seems medically possible--it's how we help, it's part of community, and it is soooo ok. If we can't tell each other the things we dare to dream for each other, then how can we love and know each other? This is where we live! and these are the hands and feet we have!  Can I be free enough to receive another's brave hope for us without attaching strings to how it should be worded or thought?  

My idea of wholeness needs tweaking. The Author and Finisher of his little body SPOKE IT INTO BEING. I think I'm just now receiving that if He wants to change anything, He can, without secretly meaning that I think because He can, He should. If He doesn't? I don't think we'll fall out of His hands. If anyone who loves us or just hears of our sweet little man feels moved to pray for anything, far be it from me to set my face against that hope. For me, the miracle is that YoYo is our son, the waiting child for whom we waited so long. The daily care thing is so normal now that I don't think of him as "handicapped," I think of him as a 3-year-old whose energy and appetite for learning leaves me in the dust on the ground gasping for breath. He is formidable. That's funny, because I have to catch myself when someone feels sorry for him or can't believe how awful his condition is--it's like I've completely forgotten that just a few years ago, I would have only heard about bladder exstrophy through TV or charity appeals--like it would have been some sci-fi thing.


Enough! Now for the snippets...


Shilo is no longer mine. YoYo told me quite seriously, "Shilo is MY dog, MaMa. I feed her and pet her, but I can share her with you. You can pet her if you want to." So when the next vet bill comes, kid, what you're saying is...


We went to Barnes & Noble and discovered that some GENIUS installed a train table in the kids' section. I cannot tell you what this means to us. Suffice it to say, he's still got his coat on in the photo-when I asked him to take it off, he said, "There's not enough time, Mama." Apparently my priorities are all wrong.


YoYo wants to read. We've been playing games with letters in the tub, on the fridge, on blocks-when he initiates-but he does NOT want to spend time on the letter "B," people. He wants to know how to spell "BABA" right now! Yeah, yeah, these letters are all nice, lady, and I hear what you're saying, but what can I WRITE?! In the meantime, he channels his energy into color sorting. It's probably some cyrillic code.

boy of constant sorrow

And the saga continues

Happy New Year! 2009 has flipped a switch in our boy. Just as I despaired of never being on schedule again—it rocked my world more than it should have—we're back in a routine. But now, YoYo needs more. Not more stuff, but more stimulus, it seems. I can’t tell if this is a long unwinding from holiday chaos or if it's a new layer of his person growing into toddler-hood before our eyes.

He pretends to read all the time, desperately wants to write, and wants to either dance or draw nonstop. It sounds inspiring, but it is wearing me out. Each time I send him to play with his cars so that I can do dishes or cook or be sick for a minute, instead of crafting something that will offer him what he’s after, I feel as though I’m compromising his adulthood. It’s not about minimum wage job versus trust fund magnate, it’s about cramping his person—making him smaller to keep my world safe. I know I can’t take each moment that seriously, but I do, again and again.


This week, we’ll return to the urologist for the first time since August. Not sure what to expect. I think we’re supposed to talk about some reconstructive surgery options for his pelvic area—I guess more cosmetic than anything. It seemed the most sensible time to do this would be at the beginning of a new insurance deductible, and at naptime to boot. Oh, but we’re the smart ones!

I am desperately trying to upload a video of YoYo dancing while cramming popcorn into his mouth (he thinks I can't see it happening). PS, thanks again, Dad, for the GIGANTIC container of popcorn. It's the gift that keeps giving.