One year today
Abby, you have your brighter day. We'll see you soon. xxxx
Archived updates, memories, photos and videos from our daughter Abby's amazing life
Abigail Erin (16th September 2003 - 8th March 2007)
Abby, you have your brighter day. We'll see you soon. xxxx
WELCOME TO HOLLANDI am often asked to describe the experience of raising a child with a disability – to try and help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…
By Emily Perl Kingsley
When you're going to have a baby, it's like planning a fabulous holiday trip – to Italy. You buy lots of guide books and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may even 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 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, go away, because the loss of that dream is a 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, very lovely things about Holland.©1987 Emily Perl Kingsley
As most of you will know, Abby’s story started in September 2003 when she was born by emergency caesarean-section after difficulties in the womb. She spent a month in special care, where it was discovered she'd suffered "catastrophic" brain damage due to a lack of oxygen before birth. Abby was in hospital for the first nine months of her life and nearly died on several occasions.
When she finally came home to be with us as a family, we had to get to grips with a very different kind of parenting. Abby suffered from severe cerebral palsy, severe epilepsy, had very little control of her limbs and was nearly completely blind. Doctors said she may live for twenty years or "she may not make her first birthday".
In January 2005, Abby defied the doctors’ worst prognosis and reached sixteen months old. During that time, Nix and I had struggled a great deal in coming to terms with Abigail's condition. We had many questions about what had happened, what could’ve been, and how to reconcile our faith through it all. Some of those questions will remain unanswered until we too get to heaven.
Two years ago we collected a series of photographs from Abby's life and made it into a DVD. It depicts a journey from those awful early months through to happier times at home with us. We wanted to show that although Abby's overall prognosis remained very bleak, we had begun to see some "brighter days".
The video is a testament to how far we’d come as a family in that first year and a half. A testament to how far Abby had come. So this is part one of her story. These were our ‘Honest Questions’.
When Abigail was born three and a half years ago, our lives were turned upside down and indelibly marked forever. We had chosen the name Abigail because of its meaning, “Father’s delight”, but the first nine months were anything but delightful.
In those early months our one aim was to get Abby home – to live with her as part of our family and to make memories. And, as you’ve seen, we did that. Abigail became an integral part of our family. We learned to adapt to her needs and though her care was not always straightforward it was never a chore, because Abby made it easy.
Abby needed much, but demanded little. She had a presence that could not be ignored; she engaged people. Since her death many people have said how privileged they were to have met Abby, yet she could not see or talk or reach out and touch people, but she communicated in a way that is unexplainable.
It was our privilege to be given the task of parenting her. She has taught us so much. We know what it’s like to love utterly, without conditions, and we’ve experienced at first hand the good in people. We’ve come to know many people who selflessly spend their lives trying to make the world better for people who can’t do it for themselves. To have experienced that has been a life-enhancing journey.
Our lives will never be the same; the Abby-shaped hole in our hearts will always remain, but we’re grateful that we shared three and a half years with our very special daughter: Abigail Erin – the “Father’s Delight” who communicated so much without saying a single word.
"Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me."Love and blessings,
We're very aware that so many people have been accessing the website today for news of Abby. We're sorry that there has been no news until now. It's been a long and difficult day, but I don't propose to give every detail now.
After talking to the consultant at lunchtime today, it was clear that Abby has been deteriorating over the last few days. A further chest x-ray this morning showed that Abby's damaged lungs have got even worse and are beyond repair. Tonight, as I write this from the computer at Abigail's bedside, we are entering the final hours of her beautiful, strong-willed, love-giving and yet difficult and eventful life.
She is very comfortable but fading now. Friends and family have been visiting and Abby has had lots of lovely cuddles. She's very settled indeed and very peaceful. We are both spending the night here at the hospital and we will update here soon. We're so incredibly grateful for the love and support of so many people.