Theodore’s Journey Part IV

So I started keeping better track of things on the Carepage, and now I’m going to start a new blog just for Teddy’s stuff, and will link here when I get it going.

I did want to write a post on the emotional side of all of this. This is very stream of consciousness. I’ve made no attempt to filter, to put in order, or to make this make sense.

I remember, less than a month ago, being told by Dr. Auron (neph here in DM) that he probably had posterior urethral valves and would need surgery at about 6 months in Iowa City and I was pretty upset about that. I would cut off my right arm with a dull pocketknife if we could go back to that plan.

In the last month, I’ve gradually stopped crying during medical procedures. I’ve found my voice again. I learned how to change diapers with four different cords directly in the way. I somehow was completely OK with surgery on my newborn… 3 times. I had over a week where I cried – in front of strangers – every day. Then I had times when I was genuinely feeling OK, and then I’d see something in the hallway on my way to lunch that would just trip that trigger and I’d be sobbing. I’m honestly still like that. I’m reminded of The Replacements – that scene before the first big game, the coach and the Keaneau Reeves character are talking about how they’re like ducks on a pond – calm on the surface, but under the water, those feet are churning. I’m OK on the surface, but if you delve down even just one fingernail deep, I’m really not that great.

I have yelled at God nearly every day. I have taken comfort in a sermon I heard once about how God was big enough to withstand our fury. I’m not going to hurt His feelings. I can be furious with Him and trust in His care all at the same time, and I’m not even going to try to explain that one. I have said, countless times, that His plans suck. He needs to come up with something better. But down inside, I still trust that He knows what He is doing.

You know, my mom had kidney failure at the age of 50 after 46 years of battling diabetes. But she was 50! Teddy was 1 week old. ONE WEEK. What kind of a God would do this to a one week old? Yes, I’ve asked that question. And I’ve meant it, to a certain extent, even though my personal beliefs do not include a God who “does things” to people. Again, I don’t try to explain that.

I trust that God knows what it’s like to watch your child in pain.

I sent this email to my uncle (a minister):

I am really struggling with this one. For the past 6 months, I’ve been trying to memorize Psalm 139. (Mommy brain makes it a challenge, lol, but I’ve nearly got it down now.) It has the verses about “For you created my inmost being; you knit me together in my mother’s womb… My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.”

And I read that and I sit here and wonder how God could do this to a tiny baby. How, when he was knitting together MY baby, could He have decided to give him only one kidney, and then to make that one not work right? What did we ever do to Him that He feels we have to go through all this? What did my three year old do to deserve to be away from her mommy for weeks at a time, shuffled around on a makeshift daycare schedule of friends and family? What did my 7 year old do to deserve any of this? And mostly, as I watch them take away my baby for two surgeries, as i watch them poke him and stick things in him, and cause him pain several time daily, I wonder what HE ever did to deserve this. He is not even 3 weeks old, and his whole life has been pain.

I know Gods plans are based on a much broader view of things. I have such a limited perspective. I know all things work to His glory. I have received email from people I don’t even know that they heard about his story and it touched their lives and that God is working through Theodore to change them…and that is great, but doesn’t actually help much. Because it still leaves me wondering how this is at all fair.

And, yeah. I mean, it’s great that Teddy is touching the lives of others. It is. But surely God, who created the Earth from NOTHING, and made man from dirt, could have come up with another way to reach those people. I mean, don’t tell me He is THAT lacking in creativity.

Do I sound angry? I am, and I’m not. I am mad, like I was mad when we had our second miscarriage. I was furious, at everyone and noone. I’m not as furious as I was at that time, but there’s a lot of emotions in there that come out most easily as anger.

Here’s where I indulge my petty side. When I was dealing with our second miscarriage, I had a few friends who were also PG and they felt a little uncertain about me dealing with their healthy pregnancies. And I was really OK. I went through a period of being insanely jealous of those people who just breeze through pregnancies without any hint of worry that something might go wrong. I still kind of hate those people, and it’s not even their fault.

This time, I’m having more trouble. I don’t know who all reads this blog, but yes, it’s possible I’m going to be talking about you here in a second. It’s not you, it’s not personal. It’s nothing you do, can do, can stop doing, etc. It’s me and I just need to work through it.

So, yeah. I have several friends who are PG and going to 20 week ultrasounds and hey! everything looks GREAT!  Oh, my, God, I can’t even begin to explain how that makes me feel. I am OF COURSE happy for them. I would be happy for people I hate reporting that news, too. Don’t misunderstand. But I also kind of die a little inside every time. I have friends with happy, healthy newborns who, again, I am of course super happy for. But, yeah, I also can’t help but think “dammit, why can’t that be ME?” I had SUCH a hard time while we were inpatient with this. Walking to lunch, I’d pass someone with a baby in a stroller and want to scream a little. Looking at the other NICU parents, some of whom had that same shellshocked look I’m sure I had the first week, but knowing that most of them were there only for a few days or a week while their premature but otherwise perfectly healthy baby grew just a bit stronger. You get to go home and stay home and forget about this, I couldn’t help but think. I would kill to be you.

No, I’m not the first person to have a baby with an illness. I’m not the first person to have a baby in the NICU. I’m not the first person to have a newborn with kidney failure. (though, in the grand scheme of things, we are among the few there.) I know that. (And I’m surrounded by friends – close friends and not so close – who have dealt with NICU babies and babies with health problems, and etc. and I’m sure each of them has gone through similar emotions.)

So I have a post percolating about Star Wars and God and all of this, working with the “All the days ordained for me were written in your book before one of them came to be” and my view of omniscience. It should be a doozy.


One response to “Theodore’s Journey Part IV

  1. I have been in those shoes. I think the hardest part was dealing with trying to be happy with those who had “normal” babymoons rather than the stress I was dealing with.
    The best thing you can do is be honest with yourself and those around you, which is sounds like you are doing. I have dealt with feelings of guilt over you having such a tough time when our experience, though not a walk in the park at the end of the pregnancy itself, in relative terms has been excellent. I hate watching you guys go through this. I know you’re tough. I know you’ll make it through, but not without scars, for sure. And do let me know if we are too much at times; like I’ve said, we’ve been there. It is part of the reason I keep offering any help of any sort, but at the same time giving you your space, as I know what is going on emotionally sucks as much as the physical aspect of it all.
    I just keep praying for his kidney to heal; that there will be no need for dialysis or transplant and that you’ll keep going to appointments and the doctors will just keep sending you home. We both
    know God can do it. ‘
    In the meantime, be pissed. Be angry. Be upset. Just know that both through the tunnel and at the end, I am here, no matter what you need, and can take a beating, if it means you and the family come through intact.

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