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.
1 comment:
Gosh, I love to see pictures of that boy! And by-the-way, Missy, you are the superwoman! #1 I would not have willingly and unconditionally asked for a child like YoYo. But, that was before I knew YoYo. My outlook is totally different now and for that I have to thank you. But, you went for it without that knowledge! Yes, I asked for Claire, but God had to sneak her in. My greatest fear, and He knew it, was that I would have to deal with bladder and bowel issues, and even knowing that those were a probability, I lived in denial that I would have too until the day it became obvious. Why, I don't know. And though it was obvious to me while we were still in China, God allowed me time to grow accustom to the idea before having a medical professional tell me what I feared most. Thankfully I had peace about it by that time. MY PEACE WAS DUE LARGELY TO THE FACT THAT I HAD MET YOU GUYS AND SEEN WHAT YOU WERE DOING IN CHINA! And #2 I only have to cath Claire when she is awake. She is allowed to sleep through the night, from 9pm-8am, thank-you-Jesus! You are amazing. I know that I would do it, if I had been told I needed to for her health, but like you, I would have been overwhelmed. It would wear on me too.
You are an amazing Mom, Shane is a wonderful Dad and YoYo's progress, health and thirst for life is a testament to that. God picked you for a reason, Anna, and don't you ever forget that!
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