After 94 beautiful years, Alex’s grandfather, Teddy’s
great-grandfather passed away. It was sad, naturally, but it was what a funeral
should be. It was a tribute to a beautiful man’s long and impressive life. A
WWII veteran, a Harvard graduate, a successful business owner, but most
importantly a loving father and loyal husband of 60+ years. He lived a life
that people would envy. People would switch places with him. He was one of the
coolest people I’ve ever had the pleasure of knowing and loving. And so his
funeral was a celebration of life….for a man that lived. I planned a funeral
for a boy that never had a chance to live.


The Internet is a beautiful thing-amazing really. And full
of wonderful pictures, stories, and information. When Teddy passed away I did
what so many people do when they need answers- or help…. I googled “how to plan
a baby’s funeral.” I found lots- but nothing that I wanted. I didn’t want some
religious support from a website, I didn’t want stories about miscarriage, or a
blog to connect me to other people that lost children. I wanted concrete help-
advice- from someone who has been there. How to survive, how to plan a funeral
for someone that never got a chance to live. So here it is…for the person who
finds himself or herself googling the worst thing in the world. Here are my
lessons learned from someone who has been there….someone who knows a funeral
isn’t always a celebration of life- but recognition that we- that he- got



1.     1. Delegate where possible

Sure I’m a type-A control freak.
But the one thing in life I needed, wanted more than anything to control- I
couldn’t. I couldn’t save my son- and you’re reading this because you couldn’t
do the same. Let the control go- let people help with the details. You won’t
remember them anyways- nor will anyone who attends a child’s funeral. So let
your mother pick the funeral home, have your mother-in-law pick the readings
and readers, let your sister arrange the flowers.  These details don’t matter- focus on the ones
that do.  


2.    2.  Speak- with your words and your mouth

Give the eulogy. I mean it. This probably
sounds like the most impossible things to do in this world- but it’s not. You
lost a child- you’re about to do a million things you never thought you would
be able to do- and you’ll do it all out of love. Give the eulogy- talk to your
child in your words- no one could ever do him/her the justice you can. Have a
backup plan just in case, a close family member ready to read if you can’t get
though it… but please try. For me- when I read it in the church- it wasn’t my
first time. Before we left the funeral home the day of his mass, I read him my
letter, my eulogy, when it was just Teddy and I. He heard my letter first. I
sobbed the whole way through- but it made the church reading seem easy in comparison.  And if you have it in you- write your child’s
obituary. The funeral home will send you some template about how your child “is
now in god’s loving arms after passing away with his family surrounding” him. Whatever.
Your child deserves better than a template obituary…write the words. And pay
the money to tell his story- even if it is by the letter.


3.     3. Make it personal

Don’t ask me why- but I decorated
the funeral home. If you weren’t there, you probably think I’m kidding- but I’m
not. Not even a little bit. I brought in pillows that were personal to us.
Pillows made by so many of you- pillows that said, “I love you to the moon and
back.” I brought team teddy blankets and hand-made quilts. I had picture fames…everywhere.
And not crappy ones- nice “homey” frames with all of my Teddy favorites. I also
had a homemade video montage playing with Teddy’s favorite songs, “Happy” by
Pharrell and “The Man” by Aloe Blac. That’s what I chose to focus on- making Teddy’s
home for the night- one that he would be comfortable in.


4.     4. Don’t prepare yourself

I’m talking physically here. Have
your friends get you an outfit. Have your hairdresser fix your hair. Send
people away with your dry cleaning. You will not be able to do this yourself.
If my friends had not come with an outfit- I would have gone in my PJ’s. If my
hairdresser didn’t open at 6am to do my hair- I would have gone unshowered…and
in PJ’s.  Focus on your eulogy and bringing


5.     5. Prepare your child

Spend your energy on thinking about what
you want you baby to wear- what you want them to have with them. What you do
and don’t want. This may sound silly- but I constantly think about how Teddy is
buried- how he has the blanket his great-grandmother knit him, how he has his
fan to keep him cool, and his puppy to calm him down. How he has his Patriots
shirt to show his loyalty, his shoes to show his coolness, his cape for flying,
and his 23 socks for luck. But more than this- they will ask you if you want to
see your child, “one more time.”  They
are talking about embalming. I couldn’t. My baby suffered so much on earth
between the medicine, needles, and pain of menkes that I didn’t want anyone to
touch him. Additionally, they will ask you if you want an open casket. I
personally don’t think you should put yourself through that- or anyone else.
Seeing a baby’s coffin is punishment enough. 
Additionally, if your child has medical equipment- think if you want it
removed. I was so focused on Teddy being at peace and no one but me touching
him- that I didn’t think to have his button (g-tube) removed. I wish I had. I
don’t know why I think about it so much- but I do. I like to think that he’s in
heaven playing like all other little kids that got screwed- but he’s got a button.
I wish he was button-less up there.


6.     6. Private or not?

I don’t have an answer on this one.
We chose to do a private burial. At the time it seemed far too overwhelming to
have everyone there to say good-bye…so we didn’t. At the time it seemed right-
but now- I wish those people knew where he was buried. I wish they would visit
him- but they don’t know where he is. Additionally- it was kind of awkward after
his funeral service. After we left with Teddy, people started pouring out of
the church. Since no one was invited to the burial- they just stared at us
until we pulled away behind the hearse. No matter what you do, private or not, ask
your funeral home for a car with tinted windows. I wish I could have been
invisible at that time- but I wasn’t.


7.     7. Make the grave special

Don’t go with a boring stone with
your name on it. Yes, I understand that you will be there too someday- but who
cares. I won’t be visiting myself for the next 65 years; I’ll be visiting
Teddy.  Make it special- make it
personal. Teddy’s stone has the “Super T.” I’m being buried with a superhero,
the greatest that ever live- and I couldn’t think of a greater honor.


8.     8. Make the funeral special

I asked everyone attending the
funeral to wear orange in blue in honor of my Teddyman. Of course, I didn’t
post this online until the day before the funeral- but either way- the results
were “nice” is that is even an appropriate word. Blue and orange shoes, blue
and orange hair, blue and orange clothing and accessories. It was a tribute
that I’m sure Teddy smiled at.


9.    9.  Wake or not to wake?

I wasn’t sure I would ever stand at
the front of a wake line. I’m not the oldest child, so my sister will be first
when my parents die. I guess I would if Alex dies first- but that’s about
it.  Never ever did I picture myself
standing at the front of a wake line for my own child. And if you haven’t had
that experience- I suggest you don't. I guess I was on the fence about the
whole wake thing- on one side I wanted people to come and pay their respects,
but on the other, it seemed too overwhelming. And it was… the wake was too
much. I stood there for three hours “greeting” people, people that I ether
didn’t know, people who couldn’t control their emotions, or people that when I
saw, I couldn't control my emotions. I spent at least a third of the time in a
back room trying not to have an anxiety attack- trying not to lash out against
the next person that tried to make small talk. My opinion- pass on the wake and
save your energy for the funeral.


10.10.  Keep

Once again- delegate this task. Have
someone get copies of the paper with the obituary, have someone save you a
prayer card, have someone grab flowers from his grave and dry them. These are
things I had to track down after the funeral because I wasn’t thinking clearly
at the time. Save it all- whether you think you will want it or not- you will.


I love you to the moon and back Teddy Fish.
I will never let anyone forget you.