A crazy quest to raise awareness for the 1000's of children fighting Congenital Diaphragmatic Hernia.
No One Knows....
No one knows what it's
like to ask yourself "Why my child?" so many times that even God is
tired of hearing it - unless they have been there themselves.
No
one knows what it's like to never hear your child cry until they are a
year old because there are tubes down his throat preventing his vocal
cords from working - unless they have been there themselves. 
No one knows what it's like to call 911 more than you call the pizza delivery place - unless they have been there themselves.
No
one knows what it's like to try to sing songs and read children's books
to your child like everything is normal and you so desperately want all
the normal things healthy families have, even though you don't know if
your child will live through the week because he has a blood infection -
again - unless they have been there themselves.
No one knows what it's like to battle the school
system and have an IEP for a child who has a feeding tube, hearing aids,
thick eyeglasses and being told that they "can't handle all his issues"
so you are better off homeschooling - unless they have been there
themselves.
No one
knows what it's like to spend every hour that visiting isn't permitted
in the PICU in the medical library, looking up your child's birth defect
because NO ONE SEEMS TO KNOW WHAT THE HELL IT IS or where you can find
information or support. And then spending hours beside your child's
hospital bed with a medical terminology book translating it all - unless
they have been there themselves.
No
one knows what it's like to lose your child in your own arms, while
they look up at you and you try and try to save them but can't - and the
guilt you live with every day for not being able to perform a miracle,
the impossible, more than even the doctors because you're mommy and
you're supposed to do the impossible - unless they have been there
themselves.
We have a campaign at CHERUBS called
"Save the Cherubs" (what we endearingly call children born with CDH). We
put wings on these kids to raise awareness because of the 50% of those
children who do survive CDH, 99% look completely normal. That is
wonderful for these children, but not so great for awareness. Sticking
wings on these kids brings attention to the birth defect. Little
awareness means little research funding. With 800 of these children
dying each year in the U.S. alone, funding is desperately needed. So
around Ireland we drove, taking lots and lots... I mean 1000's of
photos. Many included wings. A travel tradition that I started when in
Europe last year for a medical CDH conference. We put wings in front of
landmarks and take photos. We then turn these photos into posters.
Posters that mainly aren't printed due to lack of funding but we have
hopes of someday printing them! Photos of wings in front of the Eiffel
Tower, Big Ben, Dutch windmills, etc, etc. Then back in the States with
photos of wings (and sometimes kids wearing them) in front of the Statue
of Liberty, Capitol Hill, the White House, Walt Disney World, etc, etc.
It's a tradition now. 
We
went all over Ireland and went to Belfast on a day trips as well. We
took photos with Brandon in wings to represent CDH survivors and photos
of just wings to represent Shane, Owen and all the cherubs lost. We
climbed the Giant's Causeway. We all kissed the Blarney Stone. We all
found four-leaf clovers at the Cliffs of Moher. Ireland welcomed us with
not 1, but 3 rainbows. From Dublin Castle to Blarney Castle to Galway,
Waterford, Kilkenny, Cashel, Cork and Connemara we took photos and
laughed, explored and ate our way through Ireland. 
