I’ve only just begun telling the story of Teddy. And I’ve
merely started sharing my journey through

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life’s most difficult test. But
before I can continue- I have to tell the story of Royce. It’s been hanging
over my head for months now and inhibiting my ability to post here. I cry on my
way to and from work everyday. I cry for about two hours every night from the
hours of 2-4 am- all for Teddy. I can’t
believe my life has to go on. I can’t believe I can’t throw myself off a cliff
of slit my wrist in a bathtub. I can’t believe people are dying everyday that
want to live- people that have to leave their children – while I suffer here as
a shell of who I once was gladly willing to take their place. But I have no
choice- and it’s not cause I wouldn’t want to make my parents feel the pain of
losing a child. Grief is an incredibly selfish thing- and in my mind- if I was
gone- my parents would feel the heartache that I feel everyday- and they
wouldn’t blame me…they would understand.
But it’s not cause of them that I continue on…and it’s not cause of
Alex…and certainly not Tuna. It’s
because of Royce. How can I tell of the
story of my son – and do him justice- without telling the story of my daughter.

And I think part of me is scared to tell this story- in
fact, I know part of me is. Scared my husband will be mad at me. Scared that
one-day Royce will read this. Scared that the people that support me will judge
and look at me differently. And those are all real possibilities. So this is my disclaimer- this is my story-the
story of the greatest loss. I lost a child and there is nothing in this world I
wouldn’t do- and no one I wouldn’t sacrifice for just one more kiss from my
baby. People always say- “it could be worse…” I hate that expression. Yes, in
99.9% of situations- that’s true. But I’m the .1%. So this is for me- and those
other .1%-ers that know- nothing you could throw at us could ever be worse….ever.

Parenthood is a decision that shouldn’t be reversible. No
one in their right mind becomes a parent and hopes for the day they are
childless. Well- we are- sort of. And I’ve written about how I would never want
to wake up without a child- certainly not after knowing the joy and fulfillment
of having a child. But I do- every morning since the 6th of May-sort
of. I’m pregnant-but I’m not sort of pregnant- I’m very pregnant. 9 months with
only two weeks until evacuation day.

I should be happy right? Cause I lost a child-and now I have
another on the way.

I should be happy right? Cause so many women want children
and can’t have them- yet I can.

I should be happy right? Cause society says pregnant women
are happy.

I should be happy right? Cause this is my “second chance.”

Screw that. I’m not happy. This child feels like a
replacement- and I’m deathly scared people will view her that way. There is no
way to replace Teddy- he was and always will be irreplaceable. And while the
body is an impressive thing- the ability to make a baby- mine has betrayed me-
and I don’t trust it. So while the gift of pregnancy is not lost of me- I can’t
enjoy one second of it- 1. because pregnancy sucks (good for you if you can
actually enjoy gaining 30 pounds, being exhausted, giving up diet coke, and
watch your beautiful clothes sit in the closet as you squeeze into some
overpriced, polyester-blend POS from one of two crappy maternity stores) and 2.
my babies die. I know that whatever piece of happiness she gives me can be
taken away in one singular cell mutation. And I firmly believe everyone that
tells me this is my “second chance” should be punched in the kidneys. Really?
My second chance? Did you really just say that to me? Are you implying I did
ANYTHING to deserve this? Really? Cause I in some way screwed up Teddy’s life-
so now I get to make it right? Holy shit….you’re a moron- I guess they are
practically giving out medical licenses in Massachusetts. Oh- and while you’re
at it- and have met me for all of .3 seconds- why don’t you recommend some
medicine so that I “can enjoy this.” Or better yet- ask me if I want my tubes
tied…cause that sounds reasonable given my situation. Not that I’ve been
stewing or anything.

I told myself I wanted to be pregnant. And when I was- that
phone call was like someone had stabbed me. Pregnant? No. I can’t be. I just
can't. I selfishly wanted a baby but had never thought of the reality of it
all…caring for a newborn while caring for the terminally ill love of my life.
How could I do both? Better yet- I didn’t want to do both. Emotions flooded my
system and I started to cry immediately. How could I take a single second away
from my Teddy Nugget when I knew my seconds with him were so limited? How truly
dumb and selfish of me. Then I got angry. I told Alex stupid things like- “I
refuse to hold this child,” “If you want this child- it will be your responsibility,”
“I will sleep in Teddy’s room and take
of him- you can take care of the other child.” And swore up and down- I would not deny Teddy
one second with his Mommy because of some other baby- a baby that could never
be as precious and loving as my first-born. Alex seemed numb. He admitted he
wasn’t ready- but said that “by the time the baby got here- he would be ‘ok.’”
So naturally I got more angry. I didn’t get pregnant by myself and I wasn’t
willing to go 40 weeks without his support – just for him to step in at the
last minute and be the hero. So- I
begged him not to make me have this baby. I wanted out so badly- so truly
badly. I wasn’t ready- I wasn’t even close to ready. I met with my doctor about termination- I made
phone calls and even an appointment. I was desperate- my feeling were so truly
desperate.

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But despite all of my feelings, I agreed to go through with
the genetic testing. First step- boy of girl (which matters immensely
considering Menkes is x-gene related). Girl. I knew it. I knew it since the
second I got pregnant. It was a girl- and again, I cried. Don’t get me wrong-
if Teddy was healthy and I was having a daughter I would have been elated. I
would have locked up shop and been done with kids. One boy, one girl, one grown
husband-child, and one ambiguously gendered dog. Perfect! But that wasn’t the
case. Someone was stealing my boy away
from me- and gave me a girl in his place? A girl without a chance of Menkes-
but at the time, I couldn’t see it that way.
Plus- we were still 4-6 weeks away from the other genetic results. So I
continued to talk about termination- and Alex continued to say very little…until
it came to a head one night. I was days away from my appointment when he
started crying. Tears- from a man that is generally, well, tear-less. “You can’t do this to me- I already have one
dying baby- I can’t have two.” And there is was. An opinion, emotion, and I
guess -love.

I wasn’t making threats- I was serious- and desperate. I
wasn’t trying to push him to crack or say anything- I was just trying to
survive- and survive in a world where he had shut-down and I was alone dealing
with the reality of my son dying- and petrified to bring another child into
this world. So I skipped the appointment- for him, the man I love. Two weeks
later Teddy died.

In my last entry I wrote about some of Teddy’s final days-5
of them- in which Teddy and Mommy snuggled until his last breath. As he laid on
top of me- she started kicking. She was kicking her brother- letting him know
she was there. I asked Teddy to take care of her- to be her guardian angel. And
I know he listened…..and this is how….

When Hospice came that afternoon and made that final call
that Teddy wouldn’t make it- we broke down….everyone. Our son, their
grandchild, nephew, cousin, and Super Hero- he was leaving us. There could be nothing worse. Hospice suggested
we take Teddy for a walk and get out of the house one last time- alone. So Alex
and I put him in his carriage-and walked down to the beach- where I held my
baby in the sand until I thought my arms and legs would give out in grief. We
cried and cried and then pushed our Nugget home. On the way back my phone rang-
a random number. I didn’t answer. Two minutes later- Alex’s phone rang with the
same random number. I got nervous-and told him to pick it up. He immediately
handed me the phone. It was the genetic department at Brigham and Women’s
Hospital in Boston. Our girl- she was perfectly health. And when she arrives
any day now- she will be named after her guardian angel- and brother- ROYCE.

I love you to the moon and back Teddy Royce Fish. I will
never ever ever let anyone forget you. You will be the best big brother.

Xo, your Mommy