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Gabby Carter

(Continued)

In order to get Gabby to take these capsules I had to empty them into her juice bottle with tea, the problem was the carotene stained everything it came into contact with, Gabby dribbled profusely.... bibs and clothes alike were ruined, and no amount of washing could remove it, and....Gabby had a game! She would turn the bottle upside down and let it drip onto the sofa... she was painting carone blobs all over it! After a few months I made the decision that she came off the carotene. Mainly for two reasons... Gabby was now a deep orange color and she was being backed up by a total sun block cream, they were useless to her... on venturing out it was still only taking ten to fifteen minutes for her to start a burn... bearing in mind, she was covered by a huge floppy hat, and was in a pushchair with a large pram canopy over it, the time in being exposed had not lessoned at all. The other reason was that on a routine visit to our own doctor who was overseeing the carotene phase said she would have to do a liver function test as a matter of course.... I asked why and took the answer the wrong way as I never fully questioned her on it... she said, "Because it could cause liver disease, in very rare cases it can" I got my wires crossed... I thought she was talking about the carotene, she wasn’t, she meant the porphyria! It wasn’t her fault... she was so attuned to me, I would ask what I wanted to know as and when I could absorb it fully, she understood that I could only take in so much as so much was going on...

Gabby's third birthday came, birthdays are so special to any child, receiving presents and cards, a happy noisy party... cheeks glowing with excitement, lungs abnormally expanded with air for countless attempts at blowing out the candles of the cake, to us.... this was the ultimate birthday, for this one and the following fourth birthday photos, were the only ones we ever had where she was completely free of a burn. This birthday she glowed, so did her skin, she was so perfect and so happy in herself.... truly happy. The only birthdays she had which held no pain, no scabs, itching or sadness.

This transformation had come about by keeping her in through daylight hours.

As soon as the sun went down Gabby and I went out, she could not wait for night to fall, the days were so long for her, we spent most of our time in the play park just near our house. The opening of the door to the outside to Gabby was a magical moment, the wonders of the world appearing right before her own eyes, and it was waiting out there... just for her.... her and no-body else... you could see a passion fill her little face, a passion for the open air, for a freedom which only night time brought... A freedom which meant no creams, no hats no gloves, no pushchair.... and no burning, no shrinking into the darkest corner trying to get away from the light which for us gives birth to another day, a light for Gabby.... the birth of more scabs. Thrown out the door in front of her would be a mountain of toys, it was imperative they came too, well it was only fair, they had been stuck indoors all day as well, they were entitled to go out and join her fun... a pram with a dolly in, a pull along doggy on wheels, and her favourite toy in the world, a soft toy from a TV show called Roland rat and a toy phone to phone everybody up to let them know she was outside. In this park there is a set of stepping-stones one of which Gabby made me sit on, and there I would have to stay until I was told otherwise. Gabby would toddle around quite content, giving Roland a push in the swing... whilst he was swinging away she pushed doll around in her pram.... her head tilted backwards eyes held up to the dark sky... a sky filled with a million twinkling stars, stars to which she sang lullabies.... songs that she made up as she went along... in her world of make believe.... she sang to the stars telling them how much she loved them, loved them because they were so bright, but more so because they did not burn her.... I would sit and follow her every movement. Ears straining to hear her secret little words... out here she was in a world of her own and I wasn't included... I had done my bit for the day as far as she was concerned, we had played the games she wanted to play.... played the games I wanted to play, painted when she wanted to paint, danced when I wanted to dance... and fought when we tired of each others company. This was the release she craved, this was her time.... a time to be herself.... and this I understood and sat there just absorbing her whole being.... listening to her singing... talking on her phone.... her innocence produced a large lump in my throat, tears forced back daring them to flow. What had she done to deserve all this? What had I done that she was being made to pay for? I just did not understand it all... just why?

The spell would be broken, tears and lump put away till the next night.... the sound of Gabby's voice bringing me back.... and her admonishing Roland for slipping out of the swing and falling to the ground, her saying to him...."Go on.... get back in that swing... you lickle bugger!"

When Gabby was born, the relationship between ShaNeen and I deteriorated.... the fault being mine entirely. Oh I loved that little girl and still loved her when Gabby came along. But the love I felt for Gabby was so different, so different to the extent that I don’t think I can really explain it... not fully... only that the underlying feeling that Gabby was so special and a feeling that I often pushed away... the feeling that Gabby was not going to be with us for ever, all my attentions were focused on Gabby... it had to be.... it had to be in order for her to survive, it seemed I was mother, nurse doctor, twenty four hours a day.... I was tired and irritable at the end of the day, love and affectionate care had been spent on Gabby, not a lot was left for ShaNeen.... just the leftovers...I had tried to involve her as much as possible when Gabby came home as the new baby, and nothing was too much for ShaNeen...and would scurry around fetching nappies and cream, powder and so on...but for me it was not done quick enough, if she held Gabby it was the wrong way, if she wanted to talk to me it was the wrong time.... if I asked her what she had been doing at school she would start to tell me, but most of the time I cut her off in mid sentence...."Oh.... wait a minute ShaNeen I just need to see to Gab" Somewhere along the line I was forgetting she was only five years old......still a baby herself....and too young to understand any of this, Neen....was given everything material she wanted......most of her demands were met......the only demand I neglected....was her silent cry for my arms to go around her as often as Gabby had them...the loves and cuddles that Gabby got more of......her big eyes that shone with tears and spoke of her silent question... "Why don’t you love me like you love her mummy?" Please forgive me Neen... for I never within my heart ever stopped loving you... I know what I was doing was so wrong... every night I vowed to try harder with her.... to give her the love, security that I knew was right there inside me it had not gone anywhere.... I was just not letting it out.... I gave you the pain of not feeling a mothers love when you so needed it.

What a mother.... what a shit of a mother.

The Porphyria was no longer a problem, we just did not go out, that... for Gabby was the only answer, she had started to come to terms with it... we all had, not often did we go out as a complete family, once we went to the zoo in the pouring rain and once to the seaside, which, even with all the protection she had on had adverse affects, which she suffered from for about three months after.... It was now December, Gabby would be four the coming April, she had been off all heart medication for about fifteen months or so through a weaning process, she was doing well and holding her own, being winter time, the chest infections were cautiously awaited, the slightest cough dealt with by antibiotics right away, no risks could be taken, complications could easily set in. It was two weeks before Christmas that Gabby got a cough, but, it only bothered her when she lay down in bed at night time, during the day she was fine... as soon as her head hit the pillow she was off.... she coughed so hard she could not catch her breath.... I was petrified when this happened I had her sleep beside me so I could keep a careful watch on her, I panicked so much I screamed at her "Breathe, Gabby... breathe!” She coughed so hard all the air left her, with no time in between to take any back in....now, when I look back I feel so stupid... I always knew when Gabby had a chest infection; I could actually hear the wheezing and rattling in her lungs, but.... this time I missed it! I never heard anything untoward and just put it down to a harmless dry tickly cough, which irritated on lying down!

A few days later we had a routine appointment up at the military hospital for her heart, the cardiac consultant from Guys would come down to hold a clinic there every six months or so, the procedure before going in to see him was for Gabby to have x-rays and ecg's... on examination of her x-ray.... he asked me if Gabby had... had a bad cough? My reply was "Yes.... but only at night" Gabby, had pneumonia.... the bottom of her left lung had collapsed…So once again Gabby was put on antibiotics and I was shown how to do physiotherapy to help inflate her lung.... Christ... I felt two inches tall.... what an idiot! Here I was.... a mother who looked after her child with an obsession... I who disinfected the house daily, so she wouldn't catch anything.... dusted so no dust was breathed in, hoovered three times a day in case anything settled on the carpets, hands which were scrubbed like a surgeons and woe betide anyone else who did not do the same! And here she was.... pneumonia! We had to go back to the hospital after x-mas and the new year, naturally if she was unwell we just had to go straight to the ward without waiting, she was okay... the cough had eased considerably.... and the next lot of x-rays were fine, the lung had inflated, but.... to be on the safe side she was to be seen in another week.

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