Note: This entry is not meant to be depressing or make people feel sad. It is an honest account of how I felt at the time to help other parents who might be going through a similar experience.
We did not know about Daniel's condition until he was born. It was not picked up on the ultrasound because the sonographer only measured one femur, the left one.
After 27 hours of labour, we were handed our beautiful, tiny (5lb 5oz) boy. We were so excited to finally meet him. After some cuddling time, we handed him over to the midwife to bathe him. I will never forget the words of the midwife, "Let's show your Mum something". Our overwhelming joy and excitement turned to despair.
Daniel and I were wheeled to the maternity ward at about 4am. Shane tried to stay but security told him he had to leave and couldn't come back until 8am. It was the longest 4 hours of my life. I couldn't sleep thinking about whether my baby would ever be able to walk and what had I done to cause this. I didn't want to talk to anyone except Shane.
The pediatrician came to see us the next day to check over Daniel. Daniel was otherwise healthy and he referred us to a pediatric orthopaedic consultant.
The months afterwards were of mixed emotions. We had so much love for Daniel. He is such a beautiful baby. But there were days where I cried and cried. I felt so much guilt and so much fear for his future. I felt like I was in a dark hole and would never be able to get out of it.
Doctors don't know what causes PFFD and over the last year the feelings of guilt have minimised. I am still fearful for what lies ahead for Daniel but he has such a great personality and is loved by everyone who meets him so I know he will do okay. I think he will be an inspiration to a lot of people including myself! Daniel is a very determined little man and there was no way he was going to let me stay in that dark hole.
There is a story called "Welcome to Holland" which really helped me in my darkest time. It has helped a lot of parents who have had a child born with a disability.
Welcome to Holland
By Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
Posted By Kristen (Daniel's Mum)
Today we visited the Limb Fitting Centre at the Royal National Orthopaedic Hospital in London so a plaster cast could be taken of Daniel's leg in order to build his first prosthetic extension. This was very exciting because it means that Daniel will be able to start walking soon. He is already compensating without an prosthetic by standing up on his toes on his right foot and bending his left leg slightly. But a prosthetic extension will really help him.
After our eventful shoe shopping trip (see post below), Shane and I were expecting a fight on our hands to get Daniel to sit still long enough to take the plaster
cast. We armed ourselves with several tools of distraction. A combination of his favourite story book, "Where is Maisy?" and a box of raisins ensured that the technician, Simon, was successful.
