One year today

Unbelievably, it's a year today since Abigail died. It will be a difficult weekend, of course, but for us it's just a date and we'll be spending some time together as a family today. We'll be using her birthday anniversary in September much more to celebrate her life, rather than commemorating her death. Of course there have been many memories brought back over recent days of what was happening a year ago when Abby was in hospital: the decisions made, the unfolding of events and how we were feeling then. But now as then, we remain so enriched, blessed and grateful for the experience of caring for Abigail Erin. Whilst tragedy and heartache was never far away, Abby will always be a highlight of all our lives.

Abby, you have your brighter day. We'll see you soon. xxxx

Running the marathon for Evelina

Matt's sister Kerry is running the marathon again this year and raising money for the Evelina Children's Hospital at Waterloo where Abby was cared for in her last days. This is a tremendously arduous race but Kerry wants to run in memory of Abigail and also to raise much needed funds for new equipment at Evelina. She takes up the story:

In February 2007 Abby contracted Chicken Pox Pneumonitis which very sadly she never recovered from and on March 8th she died peacefully. The last two weeks of her life were spent at the Evelina Children's Hospital in Waterloo, London, where she received outstanding care. So, the reason I am running this gruelling race yet again is in Abby's memory and to raise money for Evelina so the outstanding care can go on.

Donating through JustGiving is simple, fast and totally secure. It is also the most efficient way to sponsor me: Evelina Children's Hospital Appeal will receive your money faster and, if you are a taxpayer, an extra 28% in tax will be added to your gift at no cost to you.

Please do visit her JustGiving page to donate to her total, find out how her training is going and then come along on the day to cheer her on!

First donation money goes to Demelza

Yesterday we visited the Demelza House Children's Hospice in Sittingbourne, Kent, for a special remembrance service in the beautiful chapel there. It's held just before Christmas each year for families associated with Demelza who've suffered the loss of a child. It was a lovely service with plenty of time for reflection, and the many siblings and other children there were really included too. The care we continue to receive by this wonderful organisation is second to none.

Whilst we were there we presented the first cheque from Abigail's memorial fund, which many of you were kind enough to contribute to. £1425 was given to Demelza and two more sums of a similar amount will be donated to the other charities Abby's fund will support: the Phoenix Centre Pre-School and The Evelina Children's Hospital. We're thrilled the money that so many generous friends and family have donated to will go to help other children and families in situations like ours. Thank you once again.

Abby's donation fund to close

This month we'll finally be closing Abigail's memorial donation fund, with the total (including recent interest from the bank) now at an incredible £4124. Thank you so much to everyone who very generously donated - we are really touched. This means that Demelza House Children's Hospice, the Phoenix Centre Pre-School and The Evelina Children's Hospital will each receive around £1375, which is superb. Thank you again, and we'll post here with news and photos when we visit each place to present the donations.

Classic pic: Nix and Abby in France

This classic photograph was taken in August 2006 when we were holidaying in France. Many of you will know that ladybirds seemed to become synonymous with Abby for us as a family. This was because what little vision she did have was stimulated by strong, bold colours like red, white and black, and we'd planned to decorate her bedroom with a ladybird theme. On the holiday park where we were staying there was one of those old slot machines where you put some coins in and try to grab a prize with a small crane. After a few attempts, we managed to get the soft ladybird toy that Nix is giving to Abby here. Abigail was just short of three years old here.

Classic pic: Abby and Kitty

This week's classic photo was taken on Boxing Day, December 26th 2005. We'd popped in to our friends Martin and Rachel's house and whilst we were there snapped this pic of Abby and her friend Kitty on the sofa. The two girls were born just weeks apart but of course with very different outcomes. Parental hopes of a lifelong friendship between Abby and Kitty initially seemed to have been dashed, but actually that's exactly what happened. Kitty really took to Abigail. This photo, when both girls were around two years and three months old, is a lovely reminder of that unspoken spark between them.

2003/04 updates complete

We've now begun adding the very first updates on Abigail's condition that we sent shortly after her birth. Many of you will know there was a rapidly growing list of people who received email updates about how Abby was doing. Eventually we plan to backdate this website with all of those posts, so that this site becomes the complete story of her life.

The posts will be added verbatim as they were originally written and reflect what we knew and how we were feeling at the time. To view this archive, simply scroll down this page and find the Archives section on the right hand side, then click on the month of your choice to see updates from that time. We've now completed the addition of all updates from Abby's birth through September, October, November and December 2003, and on to January, February, March, April, May, June and July 2004 when she finally came home after nine months in and out of hospital. Looking back, they were very difficult days indeed! Don't forget that the earliest posts will be at the bottom of the page.

Classic pic: In the garden

This week's classic photo is a picture we took of Abby when the kids were enjoying the sunshine in the garden at our old house one summer's day. It was taken on the afternoon of 8th June 2004 so Abigail was nine months old. The photograph is significant because it was taken in the very short six week period after Abby had at last come home from hospital but before she went back in due to epileptic seizures.

She'd just been discharged from Guy's hospital PICU after her gastrostomy operation and subsequent seizure episode. We had her home for just a month and a half before she was re-admitted to our local hospital with more epileptic episodes. This was finally brought under control after a week and she came home again on 23rd June that year.

Although it was really only a recent addition, it seems strange looking back at older pictures of Abby where she didn't have her trademark long curly locks!

Classic pic: Disneyland

Clearly this blog will no longer have regular updates on Abby's progress as it once did, but we want to continue adding to the site long term. We intend to post more archived copies of older e-mail updates so that in time, the site becomes a place where Abigail's story can be told, right from the very first update sent three days after her traumatic birth.

In the short term we also want to keep you up to date with Abby's donation fund total and where and how that money will be donated and used. There may also be additional written and audio pieces from the recent Service of Thanksgiving, which astonishingly, was over two weeks ago already!

Finally, we'd also like to add occasionally to the site by posting some of our favourite photographs of Abigail along with a bit about where and when they were taken. Many people have commented on the two videos of Abby and how good it was to see her experiencing so many different people, places and situations. We wanted to show some more of those pics! Here's the first:

This photograph was taken on the morning of 1st September 2005 during our first trip to Disneyland whilst away in France. This was our first family holiday abroad with Abigail and the kids all loved the theme park. Abby particularly enjoyed this little boat trip and really seemed to take in the lights and sounds of many of the rides. She was nearly two years old in this shot.

Donation fund exceeds £3000

Abigail's donation fund which will support Demelza House Children's Hospice, the Phoenix Centre Pre-School and The Evelina Children's Hospital has exceeded £3000 in donated or pledged money. Thank you so much to everyone who has generously given to Abby's memory. The fund is still open for the moment, but eventually donations will be split evenly between the three worthy causes.

Jon Snow on Abby

Many of you will know that Matt works for ITN and we were delighted that so many friends and colleagues from the television news provider were able to journey down to Chislehurst for the Service of Thanksgiving last week. Some of the studio crew from Channel 4 News were among them including its main presenter, the wonderful Jon Snow. Jon was kind enough to write about his experience of Abigail and the funeral in The Sunday Observer this week and also devoted his short Snowmail programme on More4 on Saturday to her. We're grateful for your kind words, Jon, and glad that you got to meet Abby when she visited the newsroom last year!

You can read Jon's diary from last week (including the funeral on Tuesday) here, or listen to Jon's experience of Abigail in his Snowmail audio podcast here. Alternatively, you can watch the edition of Snowmail below. We're grateful to the More4 and Channel 4 news teams for allowing us to reproduce the programme here.

Welcome to Holland

This is the piece that Mary Nightingale read out at the Service of Thanksgiving, which really sets the scene of what it's like to have a child with a disability. It was originally written some twenty years ago.

WELCOME TO HOLLAND
By Emily Perl Kingsley

I 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…

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

Photos from the service

Here are a few pictures from the Service of Thanksgiving last Tuesday plus a photo from the cemetery.

Abby's Story (Part I)

Here is the text of what Matt said at Abby's Service of Thanksgiving before showing the original Honest Questions About Abby video and collection of photos. The video features Daniel Bedingfield's beautiful song Honest Questions which has helped us enormously in coming to terms with Abby's condition.

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’.

Abby's Story (Part II)

Here's what Nix said at the Service of Thanksgiving before introducing the second collection of photographs from Abigail's life and the You Say It Best video. It features the Ronan Keating song When You Say Nothing At All.

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.

Abby's funeral plus flowers and donations

We'd like to ask that people don't give flowers on the day of Abby's funeral, but if they'd like to, make a charitable donation instead to a central fund in Abigail's name. The money raised will then be divided between three very worthy causes that were an integral part of Abby's life and are close to our hearts. These are Demelza House Children's Hospice in Sittingbourne, the Phoenix Centre Pre-School in Bromley and The Evelina Children's Hospital in central London.

We are very keen that nobody feels obliged to give anything, but we have had some requests asking where people may make a donation. If you feel that's something you'd like to do, then please email us for the account details and how to give.

Abigail Erin Freestone

16th September 2003 - 8th March 2007

We want to share the news that our beautiful daughter Abigail Erin died peacefully in our arms at a little after midnight last night. We're so grateful that she passed away quickly and quietly after being extubated from the ventilator - she simply fell asleep in our arms. We will forever cherish the time we had with her and the enormous privilege we had to be parents to her. There will always be an Abby-shaped hole in our hearts and family, but her memory, love and character will live on amongst us and we're sure, many of you too.

The prayers, messages, e-mails, texts, phone calls, and practical help offered by countless people over these last three and a half years is a humbling testament to the power of good and friendship in the people who know and love us. Thank you, from the bottom of our hearts. We simply could not have got through it without you.

"Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me."

Love and blessings,

Matt, Nix, Becky and Josh Freestone

Abby this evening

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.

Overnight and this morning

I'm afraid Abigail hasn't had a good night and it looks likely that she's beginning to deteriorate. Nix was called and went up to the unit to see her at about 2.30am this morning. Abby had suffered some more episodes of very low heart rate and desaturating oxygen levels. Doctors are very concerned about this. She was given some morphine to settle her and stabilise her heart rate and saturation levels, which it did. In addition to that initial dose during the night, Abby is also now on a continuous IV infusion of morphine. We will be speaking with the consultant this morning about her situation and prognosis.

No real change as yet

Monday showed no discernible difference in Abby's condition despite the steroids she's been given, although doctors don't necessarily expect to see results just yet. Matt had another long chat with one of the consultants who said it could take three to four days before any improvement from the steroids is seen - if it works at all. Likewise, Abby has been put onto another antibiotic to fight an additional chest infection and it will be a similar timescale before it's known whether this bug has been cleared. We're really looking at the end of the week before doctors will be able to make a reasonable assessment as to whether the steroids and antibiotics have done their job.

Matt was also able to talk through some questions and issues with the consultant about what options might be available after that time, and what protocols would lead doctors to conclude that little more could be done for Abby.

Abigail enjoyed a lot of visits yesterday and was very settled indeed in the evening, with a steady heart rate and saturation at almost 100% - almost as if to prove (like we need telling) that she is still fighting.

Overnight yesterday into this morning, nurses reported that Abigail had suffered several episodes of a very low heart rate and desaturation. This was a concern to doctors because they had no immediate explanation as to why she might do that. Abby also had quite a lot of diarrhoea overnight too, despite the fact that she has been off her normal milk feeds for two days and is just on maintenance IV fluids.

Today, Abby's wonderful nurses gave her a bed-bath with strawberry scented creams and lotions and also another hairwash to bring out her amazing curls. It was also Matt's turn for a long cuddle in the comfy chair with Abby today, and this required two nurses and a military-style logistical operation to disconnect and reconnect the many lines, wires and tubes into Abigail. But it's been really good for both of us to be able to do that.

Overall, we continue to wait for the steroids and antibiotics to do their work and then see where we are by the weekend, but we are both increasingly pessimistic about Abby's chances of surviving this ordeal. We have been able to talk quite a bit to various people about choices we may have to make, how Abby will feel, and even life afterwards should she die, so we are certainly doing all we can to prepare ourselves for that scenario. In particular, we have sought advice about how to help Rebekah and Joshua through all this.

There is still some hope, of course. But it's now decreasing with each passing day.