Alex lives in a black and white world. Everything is right
or wrong, good or bad, justifiable or not. He can never see the maybe- the
possible justification-the need to occasionally fudge. He doesn’t believe in
the gray. I’ve always found this maddening- how can you not believe in the grey
of life? But now I find myself struggling- and wishing for a little of his
power- his ability to shut things out- the ability to trust myself.

 

We made so many decisions together over the past year and a
half- so many decisions to be second-guessed in my mind. So many scenarios that
I play out in my head- outcomes that could have been different- always
thinking- maybe if I had done this….maybe, just maybe, Teddy would still be
here. Or maybe- if I had done things differently, I wouldn’t have as much
guilt. I’m so enviable of Alex’s ability to always believe we did the right
thing. I wish I could be that way-because it’s exhausting being me. 

 

There are three decisions that still keep me up- three
decisions that make my stomach turn: the DNR, the decision to not operate, and the
decision to continue working.

 

The first one always gets me….”Do No Resuscitate.” At the time,
this seemed like a no brainer- of course we wanted a DNR. Of course I wanted
quality of life for Teddy. Of course I didn’t want him to suffer. And yet, even
now, writing those words is difficult.  I
wanted to make a selfless decision. I wanted to choose for Teddy what I would
choose for myself. I wanted to make life about living- and not surviving. But
there is another side to that decision- the side that keeps me up at night. What
if I let go too easily? What if I didn’t give my baby a chance to fight? What
if every doctor was wrong, and Teddy was the miracle baby to prove them
wrong?   The reality of the DNR decision is that
signing the paper was the easy part- but going through with it- that was the
difficult part.

 

And I almost didn’t go through with it. I panicked. During
one of Teddy’s final days I asked Dr. Vessel –I begged her- to do anything.
Save him. Put him on life support. Please. But I had missed my window she told
me. To have “prolonged” his life, I would have had to put him on life support
days earlier. And so my decision- the one I was about to back out of- was made
for me; again. And her word choice was certainly intentional. She was reminding
me that life support was just that- a way to prolong- something I swore I
wouldn’t do.  Alex doesn’t have that
regret. He knows we made the right decision. He knows Teddy was gone. He is
100% certain. That’s the black and white I envy. I want that- I want 100%
certainty. Instead I have stomach turning thoughts.

 

The second decision that I constantly second guess is the
decision not to operate. After Teddy’s diagnosis, and before we left the
hospital in Virginia, we had a feeding tube placed. Teddy had completely
stopped eating. They told us it would make things better. They told us he would
gain weight. They told us it would take the pain away from eating. They were
wrong on all accounts.  But it’s not that
decision that I second-guess-it's the decision not to operate again. They could
have performed a procedure so that Teddy couldn’t vomit. So that Teddy’s
couldn’t aspirate. But I couldn’t bring myself to do it. How could I perform
major surgery on a terminally ill baby? How could I put him through that pain
again? It wasn’t going to cure menkes – it wasn’t going to save him…so I
refused. I refused time and time again. And yet- if Teddy didn’t aspirate, if
he didn’t get pneumonia- maybe- just maybe, we would still be snuggling. Alex
doesn’t have that regret. He knows we made the right decision. He knows we made
a promise to Teddy for no more pain. He is 100% certain. That’s the black and
white I envy. I want that- I want 100% certainty. Instead I have stomach
turning thoughts.

 

And finally- work. When Dr. Vessel met Teddy for the first
time- she didn’t think he would make it three years- in fact she didn’t think
he’d make it one more. But of course, she didn’t tell us this until after he
passed. She said if she told us at the time, 
we would have kicked her out. She’s probably right- but I still wish I
had known. So without this information, I operated as if Teddy was going to be
around for a while- three years or more. In my delusion-and that’s exactly what
it was, I didn’t think Teddy was like any of the other menkes babies. He was
strong(er), social, mentally developing. Plus- we needed the health insurance.
So I went to work and did what I had to do for my family while Alex got three
very precious months at home with Teddy. Three months that they needed
together. So if there is a sliver-lining…that’s it. But now I look back with
guilt, with anxiety, we anger. Why was I working? I was his mom and I went to
work- a very flexible and understanding work- yet still work. My biggest regret
in life is that I pulled out my laptop and started working while Teddy was
sitting next to me dying. How do I forgive myself for that? And that was all me-
no one at work would have ever wanted me to do that. But I guess I wasn’t
thinking straight… I couldn’t think straight. Alex doesn’t have that regret. He
knows we made the right decision for our family- given the information we had.
He knows I did what I had to do. He is 100% certain. That’s the black and white
I envy. I want that- I want 100% certainty. Instead I have stomach turning
thoughts.

 

In my mind- I needed to see Teddy on life support. I needed
to see that he wouldn’t bounce back- that his frail little body really couldn’t
fight it. But that would have gone against everything I promised. That would
have been a decision for me- and not Teddy.

 

In my mind I needed to operate on Teddy. I needed to let him
have that surgery. But I couldn’t. It would have gone against everything that I
promised. That would have been a decision for me- and not Teddy.

 

In my mind I needed to quit my job. I needed to be there
every second of everyday. I needed to toughen up. But I couldn’t. So I created
a team of people that loved that little boy more than anything in this world. I
created an environment where every need was met. Where kisses were currency. I
created Team Teddy.  I created it for
Teddy- I created it for both of us- for all of us.

 

I love you to the moon and back Teddy Fish….I’ll never let
anyone forget you.