Monday, May 18, 2009

Reminiscing by the numbers

I am not by nature a pack rat, except for email. Before I blogged, I would write long and winding emails to people.

I have had the same email for personal use since 2004. The beginning of my miscarriage history.
I currently still have 6,495 email messages in my inbox. Read, of course. Not including spam or order confirmations.

Of the 6,495, there are 1,611 that mention the name Brody. I think there are actually more messages about him, since a lot of the time I refer to him as B in an email.

One of the first messages mentioning Brody is me telling one of my friends about how J and I like the name Brody. I wrote that email about 3 months before he was born, before we knew he was a boy, before we had ever heard the words Vacterl, craniosynostosis, or bilateral radial club hands.

I found one email that I wrote about one week after he was born before we knew everything that was wrong, and everything that would be right, with Brody. I wrote it to a coworker who is a good friend, and apparently I needed a blog even then. Especially then. Suffice it to say, I already had undiagnosed post partum depression. Brody had had two surgeries so far, and we were waiting for the results of the Fanconi's anemia testing. Brody was in the NICU, and I was largely incoherent. But what I like about the email, if I do say so myself, is that it is an exact record of my life on September 7, 2006. It's exactly how I felt, and I had no idea of the great joy that was awaiting me with Brody.

I wish I could go back to me then and reassure myself that it's going to be okay, that Brody was going to be okay.

It takes me back to read this email, for good and for bad, seeing the dark days I've come out of, and it gives me a kick to see how far we have all come. So, for posterity and, let me be honest, my own self-indulgence, I am reproducing my email here:

Hey xxxx,
I'm not avoiding you, really I'm not. It's just every time I talk to someone I start to cry even if they are just saying something mildly nice, let alone if they say something very very nice, as most people do (like your email). We really appreciate all the love you're sending us - we feel very supported and I'm so grateful.

Today was a bad day. They did the dye test to see if his esophagus was healed, and it is but in the middle of that test they noticed he had a hole in his stomach from the GI tube. So they did emergency surgery, since bacteria was leaking into his stomach (I think) from his bowel. I got to see him afterward, and they even let me kiss him, which I haven't done since Saturday. But it was surgery, and he's back on the vent again, and he's at enormous risk for infection; they have him on triple dose antibiotics and it kind of sounds like they're expecting an infection. So this will be a very long weekend as we sit there again.

I've never had such a feeling of complete helplessness. And I look at him and he's so beautiful and so innocent and he didn't deserve any of this and I wonder why this happened and is happening and when we are going to get some good news. I felt like I was a pretty strong person before last Friday, like I could cope with a lot; but this week and the continual stream of bad news and more problems and more specialists that we are inundated with - I don't feel strong at all and I don't understand why this is happening. The doctors say it's just bad luck, but come on - really? Bad luck? How much bad luck can there be? I feel very weak and I feel so bad for Jeremy - this is his sonand he's got to deal with all of this. There's all this grieving we're doing for the baby we thought we'd have and this tremendous, overwhelming love for the baby we did have along with liberal doses of sheer terror for his immediate future and the life he has to lead. I feel like I'm a logical person and if someone could tell me why - as in, what is the point of making some poor beautiful baby go through all this - then I could cope better. Maybe I wouldn't. I just wish we could skip over all this bad stuff and get to the part where I get to learn what his laugh sounds like and what his face looks like when he smiles.

It's like after my dad died.... But the day after he died, I was shocked to my toes that Good Morning America was on TV. I couldn't believe that the world had gone on, even though he had died. And even though my sweet little boy didn't die, which is probably a miracle in itself, I look at everything, and it's the same, but completely different. Even my neighborhood and my dogs and Jeremy and family and friends - things I've had my whole life - everything has changed. And all the fun and funny things that used to be in vibrant vivid color are now in black and white - except for Brody.

Christ - aren't you glad you aren't on the phone with me now? Thanks for letting me get all this out. It's hard finding a good outlet - I get so scared when Jeremy talks like this and so I don't want to burden him with all of it. He already sees me crying most of the day while he is strong and talking with doctors and coordinating all this care.

As for coming to visit, you don't have to ask - just come. I warn you that it's pretty depressing and distressing if you haven't guessed, and you are by no means obligated to come. When I see people I haven't seen I just sort of start to cry. The rest of the time we just sort of take turns going in to see him, and then hanging out in the waiting room with people telling me to eat more and staring at me to see when I'll next start to cry right out of the blue.

[our supervisor] totally made me cry very hard today. [Coworker] told me she had already talked to the benefits person about the extended leave, and that it would be covered whenever I did the memo asking for it. I was trying to tell my mom and sister about it, but all I could get out without sobbing was "My supervisor, my supervisor" and they thought something bad had happened. It was kind of humorous, in a gallows humor sort of way.

I've taken up enough of your billing day. I just wanted to thank you for all your love and support - it means more than you will ever know.


SaRaH said...

((((((Chris)))))) I'm so happy we made it to the part where we get to learn what his laugh sounds like and what his face looks like when he smiles

Dawn said...

I never realized you all went through so much when he was first born!
Since you were not blogging I am glad you had people to open up to at that time!
I also wish I could go back in time to past you and give you a big hug and tell you how Amazingly well Brody was going to do!
I wonder if future you is trying to somehow tell you now even more GREAT things that Brody will be and do!!
I think if you could talk to future you now, you would be thrilled to hear all the good news!! :)

Shannon said...

Chris, thank you so much for sharing that. I am just like you and have emails saved from as far back as 2000, if not earlier. I always find it therapeutic to go back and read through them from time to time. It was heart wrenching to read this email of yours...I felt all your pain and confusion and fear. Reading it also brought back memories of the experiences I had with my first born child and her medical issues and time in the NICU. It also reminds me of how truly blessed we are that our children are healthy and happy 2.5 year olds now. Brody is so amazing and so adorable and so incredibly wonderful and he is incredibly lucky to have you as his mother. {{{{{HUGS}}}}}}}}

CDAN Rebecca said...

I am happy that I found your are so strong, and you have such a beautiful family. Thanks for sharing this with a stranger. I feel privileged!

And an aside: I sent you an email probably more than a month ago with my address for the 'chain-letter' 2009 presents blog post. I am checking to see if you got it... no worries if you didn't have time to reply :)

-'CDAN Rebecca'