Abbie Grace Brandon
12-21-04 ~ 7-03-07
CS-2
Abbie has left a great big hole in all who knew her lives. She has a big brother called Reece who is 4 1/2, and keeps understandably getting upset about his sister leaving us.
Abbie was born the first Granddaughter to our family and both myself and Matt thought that we now had our complete family. Time on the other hand was to let us know otherwise. Abbie was born with a very rare Genetic condition that both myself and Matt are carriers for, it is called COCKAYNE Syndrome. Seeing as we had an already healthy child we did not think that anything could go wrong or that we could pass something onto our baby. (CS 2) means that the children are sensitive to sunlight, premature aging, dwarfism, poor feeding, delayed development, microcephaly, visual and hearing impairment and Abbie also had seizures. It is sadly a life limiting condition but nothing prepares you for when the time comes.
Abbie was an induced labour and all was going well, we went home the next day and what a christmas present we had, our lovely daughter. She was not feeding well and sleeping most of the time and were instructed by our midwife to take her straight to the hospital when Abbie was 8 days old and she was admitted straight away into the NICU. A lumber puncture was done and other various tests and Abbie did not cry at all apparently, and until any results came back we did not know as to what we were dealing with. As she was very dehydrated they gave her IV fluids and a couple of days later once she was rehydrated she was still not responding as she should have been. A basic brain scan was done at the time and it showed a few spots of concern and also absent red reflexes to her eyes. We were told that she would be brain damaged and blind. Well our whole world just fell apart. The next day it was discovered that Abbie had cataracts and both Matt and myself thought Oh great at least something could be done.
We saw a surgeon at GOS, who would perform the eye surgery and she thought that Abbie had this particular syndrome so when Abbie was under having her lensectomy they would take a skin biopsy and send to be cultured and tested. Abbie had a double lensectomy and because her eyes are so small and sunken that she had to wear contact lenses and not have an intruocular lens fitted. Abbie started to develop seizures at 5 months old and had an NG Tube at 3 months old, which she then had a gastrostomy done at just under 1 year old. Developmentaly Abbie was tracking at about 3 – 5 months old. She couldn’t sit unaided or crawl or talk and she was deaf in her right ear and very hard of hearing in her left ear which she wore a hearing aid for. We have been regular visitors to our local hospital, if the nurses hear the name Abbie they usually expect a Brandon to follow. We were on first name basis in the end with most of the paediatric staff, but i would not have changed one thing about my daughter.
Abbie loved to be stroked, massaged and tickled kissed and generally loved. She loved her sensory lights in her room and the many fragrances that i put in her aroma diffuser and jossticks. Abbie liked alot of tactile toys from very soft to scratchy brillo pads, (they reminded her of daddy’s whiskers). She also had a special chair to sit in at home to give the proper support and she had a standing frame which she would go in for short periods of time with her AFO splints on. Abbie had very tight ankles and i found that massage of her feet and ankles would help to bring some flexibility. Abbie needed 24 hour care as she was unable to do anything for herself and she had all her nutitional needs via the peg. But when you stroked her face and she smiled then the sleepless night that you had had because she had been very sick would soon be forgotten.
Abbie in her short life had a few illnesses, but mainly they were due to hypothermia, as she was unable to maintain her body temp (always dressed for the arctic weather). In Feb of this year Abbie had a major liver malfunction that we don’t know what caused it but we thought that this might be it, it certainly woke us up to the fact that Abbie could go at anytime. Reece had had a very bad bought of chicken pox, and Abbie happened to catch it, it flaired up the streppacocle infection in her stoma site and this in turn led to septicemia, and then to top it all off she got phemonia. It was all to much for her little body to take and she had fought so hard in the past that i think it was just a fight to hard for her. One of the hardest things i have ever had to go through is giving the ok to the doctors to stop resusitation and have to let go.
We knew that Abbie would not live for long but we thought that at least a couple more years and i know that it still doesn’t prepare you for the time when it comes. Abbie was taken to Keech Cottage childrens hospice, and Matt and myself were able to put her to bed and we went back in the morning. We stayed at the hospice till the sunday and returned on the wednesday, the day before her funeral on the 12th july. The support we have received from them, words can not express the gratitude and love for them that we feel. We told Reece on the wednesday that his sister was an Angel, and he went in to see her on the Friday, he saw his sister in her casket on the saturday and touched her and then comented on how cold she was but he was ok with that. He was at the funeral with so many other people, that it is sometimes humbling to know that for someone so small she certainly touched many peoples hearts. Abbie did attend a special needs nursery and because the service was at 4 pm, they were all able to attend and i think that they all did. Abbie was generally a very happy and content little girl, who just accepted what was thrown at her and rarely cried. she has taught me to be patient and that i can overcome anything that is thrown my way, through her courage and acceptance for things she has taught me this.
Abbie had a SENS worker who used to come and visit us every week to play with Abbie and to try to get her to do things through stimulation, she was also my care co-ordinater and became a very good friend. Her name is Mary, i was happy when Abbie started to go to nursery but also very saddened as i was to lose Mary coming round to see us as we had all gotten so fond of her. Mary spoke at Abbies service and she spoke how Abbie was one of the first to pilot a scheme in which various departments had to work in conjunction with each other as Abbie had various problems, and Abbie proved that this scheme does work.
My life is just one big void without Abbie to fill my day. Reece and me have to build up a new relationship as Abbies needs always came first. Our hearts will always ache for Abbie and my arm feels especially empty, but she will be forever in our hearts and i thank every day that i had Abbie and blessed that she came to us, as she was truely special and unique.
Play with the Angels, my little princess and remember that we LOVE YOU so much x x x x x x x x x x x
GOD’S LENT CHILD
I’ll lend you for a little time
A child of mine God said,
For you to love the while she lives,
And mourn for when she’s dead.
It may be six or seven weeks,
Or thirteen years or three,
But will you, till I call her back,
Take care of her for me?
She’ll bring her charm to gladden you
And should her stay be brief,
You’ll have her lovely memories
As solace for your grief.
I cannot promise she will stay,
Since all from Earth return,
But there are lessons taught down ‘there’
I want this child to learn.
And there, with you on Earth
This child of mine I lend,
For many souls that she will touch,
With lessons that I send.
I looked the wide world over
In my search for people true,
And from the throngs that crowd life’s way,
I have selected you.
Now will you give her all your love,
Nor think the labour vain,
Nor hate Me when I call around
To take her back again?
I fancy that I hear you say,
‘Dear Lord, Thy will be done’,
For all the joy this child has brought,
All fateful risks we run.
We sheltered her with tenderness,
We love her while we may,
And for the happiness we’ve known,
We shall forever grateful stay.
But you came round to call for her
Much sooner than we;d planned –
Dear Lord, forgive this grief,
And help us understand.
http://abbie-grace-brandon.gonetoosoon.co.uk