THE MIDDLE CHILD’S HISTORY
Gabriela is a little miracle, at least that’s how we feel about her. She’s had multiple food allergies from birth. She is allergic to dairy, nuts, sesame, eggs, bananas and the most severe of her allergies is to fish. She only has to be close up to a fish counter for her face to go red and itchy. When she was two weeks old she started to have seizures all the way down her left side from the cheek down to her legs. After a stay in the local hospital the doctors were unable to find anything that could’ve caused this and diagnosed her with epilepsy. She was put on epilepsy drugs which I was very unhappy about because I have an aunt who suffers from epilepsy since she was three and I’ve had first hand experience of how medicine can not only fail to stop the seizures but can also have side affects which are harder to deal with than the seizures themselves. After a few months however Gabriela had put on so much weight that she had outgrown the therapeutic level for the epilepsy drug to be having any effect which meant the medicine quantity she was taking was so little that she might as well not take any. She hadn’t had any seizures since leaving the hospital and I felt strongly she should come off her epilepsy drugs. This decision was very much opposed by her consultant at the hospital who tried to convince us we were making a terrible mistake. She was about five months at this stage.
The Beginning of Gabriela’s Allergies
From the first time I tried Gabriela on solid food, around four months, baby rice with msa milk her lips swelled so much that her face became distorted. I knew I had problems, I just didn’t know how many and how serious this would be. She was taken to A & E but apart from giving her Piriton no one there gave us any advice nor any follow up appointments, and we were sent home none the wiser. This is going back 11 years so the information about allergies was not as prevalent as it is now and the internet was in its infancy. I hope today anyone in my situation will have better medical attention in A & E. I obviously stopped giving her any dairy products, and I stopped having it myself because I carried on breastfeeding. I was finding it hard to introduce her to foods that I felt weren’t making her eczema worse. I had only little knowledge of what common allergen foods were and had no guidance from doctors.
After we had chosen to disregard the consultant’s advice on the epilepsy medicine the consultant had no interest in helping us with Gabriela’s milk allergy or eczema. We found ourselves deserted by the medical professions. Back then if the GP had referred you to the hospital’s consultant you were under their care and the GP just became your medicine prescriber, the consultant had the say for treatment or further investigations. If the consultant did not regard severe eczema as a distressing condition for the baby, the only course of treatment given was topic steroid cream. For serious cases such as Gabriela had, this cream has no effect. I knew the only way I could resolve it was by finding out what was causing the eczema in the first place. Believe it or not but during this period people did not make much of the connection between allergies and eczema, maybe the specialised allergy units did but your average doctor didn’t. I felt in my gut there was a connection but I couldn’t work out the puzzle and looking back it was no wonder because the puzzle was far bigger than I ever dreamed of. At this point I had no idea Gabriela had multiple food allergies with things like fish or bananas.
Searching For An Answer
I tried very hard to find out for myself what was causing Gabriela’s eczema, it had started as rashes around her face and body but it came to the point where it was overtaking her being and destroying our family life. I hate it when you hear people dismissing eczema as a mild irritant and I guess if it’s just restricted to a small area it is but when it’s severe as it was with Gabriela it becomes something else. She had stopped developing as a baby, stopped playing, babbling, being interested in the world around her. Instead her whole preoccupation was with scratching any part her little hands could reach. Even with mitts she could scratch her skin until it bled, which would then cause her pain and make her cry. I used to have to change her babygrows two, three times a day because they would be stained with her blood. She couldn’t sleep because of her compulsion to scratch, her discomfort was immense. During the day I had to carry her in my arms to stop her from scratching if I put her down just to go to the toilet by the time I picked her up she would be bleeding again. We couldn’t sleep either, her dad and I took shifts and he would have her in his arms until 2am and then I would take over until it was time to get up.
Chinese Medicine Trial
My oldest daughter was only 3 and she suffered neglect because my whole attention was with her sister and I remember clearly once when she wanted to play with me and I couldn’t, she burst into tears and said, “I wish Gabriela would go back in your tummy”. It was an awful time. We felt like zombies, barely functioning daily tasks. We asked the consultant for her to be referred as a priority to Great Ormond Street allergy clinic otherwise the waiting list was months if not years but she said she wouldn’t do it, “..we were being too demanding”. So I started to search for anything that might help us. I didn’t want to turn to just any high street Chinese medicine shop because I had heard of stories of creams being adulterated with steroids, strong steroids which would harm her skin in the long run. I had read of a Chinese medicine doctor who had run trials with Great Ormond Street hospital’s dermatology department to see how effective Chinese medicine was. I tracked down this doctor because if I was going to try Chinese medicine I wanted it to come from a trusted source. The Chinese medicine doctor gave herbal fusions for us to give the baby to drink and some for her bath water. It was impossible to make a baby drink horrid rank tasting Chinese herbal tea so this didn’t take us very far.
In an effort to explore everything I knew I took the girls to Portugal for a month with the hope that I might find a doctor there who might have some answers. They didn’t. I also went to see a herbalist, who had word of mouth fame. It was one of the strangest experiences of my life. He worked from his farm in small village and we were there very early in the morning because this was first in line gets served and we were told there were always so many people waiting to see him everyday that he would often send people away unseen. I went with my father and we waited in the yard of this farm house near where he kept the cows and took a seat on parts of farm equipment lying around. We must have been there 7 in the morning and there was a queue already. At some point the herbalist, a much younger man than I was expecting appeared spoke to each person waiting to be consulted. He disappeared and reappeared a few hours later with jars full of green liquid which he had concocted for the patients to take home to drink. With Gabriela he told me she was too young to give her anything to drink but I should take large twigs of rosemary and eucalyptus branches boil them to make a strong solution and then use some solution in her bath water. And if I remember correctly he also gave a solution he made for me to rub on her body.
The Last Straw
Needless to say none of these attempts worked and I’m not certain when but at some point after coming back to England I had enough and could no longer cope. We were so sleep deprived that one of us were in danger of harming her. At some point a flash went through my mind of either of us whilst rocking her to sleep in our arms through sheer exhaustion and loss of faculties, loss of reason, we would end up shaking her. This picture shook me so much that the next morning I made an appointment with our GP, took the babygrows stained in her blood and told her about our despair. I explained how it had been, how we were afraid of getting to the point of harming her and if something wasn’t done I felt I had no other option but to leave her in the local hospital until someone paid attention. Our GP picked up the phone to Great Ormond Street Hospital and was told the baby had to be referred through the local hospital. The arrangement was made, the local hospital saw her that day and assessed her, booked her in with Great Ormond Street, gave her some medicine for the itching and we slept for the first night in months.
Great Ormond Street Hospital Was Our Salvation
Four days later we walked into Great Ormond Street Hospital, Gabriela was 8 months old and it was just a few days before my birthday, it had to be the best birthday present you could have. During the past 11 years every single person I’ve come across who’s had children treated by GOSH have always commented what a fantastic place it is and what great doctors and nurses they’ve had looking after their child. You hope never to end up there but if you do, you truly feel like you’re in the best place for your child. I can’t emphasise enough how hopeful you feel when walking through the doors of this place but I breathed in deeply. When the Senior Registrar sat us down on the first day and asked us what the baby’s history was, family history, environmental circumstances he was really listening to us, I could feel my heart beating faster I was feeling so emotional, someone was actually listening to us. I felt so tearful I had to push back tears just so I could answer the questions. All the months of frustration, anger, helplessness and pain were coming to a head and when the Senior Registrar told us Gabriela was one of the worst three cases he had seen all year I could have screamed and break into a dance all at once. Yes! Finally! Finally I felt vindicated of that I thought about Gabriela’s condition, it wasn’t just an irritating rash, it was bad, really really bad! They took photos straight away to put into their files for teaching material.
What they found astonishing with Gabriela’s body completely covered with eczema was that she did not have any secondary infections. Normally when a child is this bad and scratches they will have skin infections caused by the constant broken skin but with her, there were none, which puzzled them. When we explained the use of rosemary and eucalyptus baths they said it must have been the antiseptic qualities in those plants that kept her skin so healthy and clean. At least out of my miserable search it was worth the trip to Portugal and receiving the advice from the herbalist to bathe her in the aromatic infusion. My baby stayed in hospital just over a week and it was certainly a birthday not to forget but I was seeing progress. For the first time since she was four months old she was playing and smiling again.
Bandaging The Baby Up
They applied a steroid cream all over her body and then she was what they call “Wet Wrapped” where you apply bandages all over her body, twice. The first layer being wet and the second layer dry. Each limb was covered in a tubular bandage, wet first followed by the dry one, and at the shoulder end you had to make little holes with scissors so that you could connect to the bandage covering her torso, with a piece cut from a bandage, the size of a string. You then had to do the same with the bandages on her legs and connect them to her torso’s bandage and finally out of another tubular bandage you made one to cover her whole head. You cut holes out for her eyes, mouth and nose so it looked like a balaclava, by the time this was finished she looked like a Mummy. This process took two people, when carrying out on such a young child who would not stay still you need two pairs of hands. After we left hospital we had to do this at home, bath, creams and bandages every single day for a year and a half. Wherever we were, the kit had to come with us, it kept her from scratching herself but the wet layer also kept her skin cool so that she was able to sleep. Our lives became very restricted because this was not the sort of thing you could leave for someone else to do.
While at GOSH they carried out blood test to find out what she was allergic to and that’s when I realised I could never have had her eczema under control because I never dreamt she could be allergic to things like all nuts, fish, sesame seeds. I was still breastfeeding her at this time because I didn’t know what milk to put her on, what food I should be feeding her. She was given Neocate, which is a cow’s milk where the proteins are broken down so the stomach does not react to it as an allergy. Some time later, can’t remember when, while she was an outpatient she was put on oral steroids for quite a while. From this point onwards Gabriela grew and developed like a child her age should. We eventually only visited GOSH once a year and at the point she was well enough not need the care of the dermatologist department, her allergy care was transferred to St Mary’s Hospital where she’s been ever since. I have a feeling she must have been 6 years old but my memory fades me a bit at this point. She also around this time became asthmatic and suffers from severe hayfever.
St Mary’s Hospital
Gabriela visits St Mary’s every year to check on her allergies, if they’re declining, she might be able to do what they call a “Challenge Test”. When the results on your bloods tests show of decline over years and are showing low on the reaction scale, they’ll often do a challenge test. This is the only way for certain to know if you’re allergic or not. What I have learnt is how tests can be inaccurate. Gabriela should by probability grown out of some of her allergies by now and at times her tests have shown this like with the sesame. In this case they like the child to go into hospital and under close supervision they will give the food in Gabriela’s case, humous, a very small amount and put it on the lips and wait 20 minutes. Then if there’s no reaction they will feed the child again a very small amount, by this second stage Gabriela started to show a reaction around her mouth from the sesame challenge test. They gave her some antihistamine medicine and that was that, she can not touch sesame. Gabriela has never been fed sesame, I have always controlled her diet when she was young by making everything she ate and in later years I became the most well read person when it came to reading food ingredient labels. Yet the test showed a decline in her allergy, low enough not to be of concern but when it came to proving it her body said otherwise. This is what’s so difficult with allergies, the only absolute, is in the eating.
Living With A Multiple Food Allergy Child
It is bad enough to have a child allergic to peanuts but when you have a child allergic to peanuts and every other Nut can make it more problematic and when that child is also allergic to dairy and eggs and fish it forces you re-think how to live your life. Gabriela can only tolerate a small amount of soya, so she tends to have soya in the form of treats like dairy free soya chocolate. Her source of protein is only meat and although she can eat wheat she has in the last 2 years developed a severe intolerance to maize making her choice of snacks even harder. Maize is in everything, stock cubes, crisps, baked beans it goes on and on. Although Gabriela does not miss the foods she is allergic to because she does not know what they taste like, she misses popcorn so much and cornflakes, she use to snack on these all the time. Even the smell of popcorn makes her miss it. I have always given the rest of the family a normal diet because I could not imagine they should be punished for something it’s not their fault, so my oldest has always had peanut butter on her toast when she wants to. We’re just very careful. I have come across adults who still resent their parent from not letting them have what their sibling was allergic to and I was very aware of this. And when it comes to eating fish Gabriela sits away from it at the table and doesn’t clear up. But when it came to the popcorn and cornflake it was the only things I had to ban from the house because she missed them so much. The oldest is allowed popcorn in the house when Gabriela is not around.
You cannot buy her a sandwich. Your whole life becomes about where you are going to be if out at lunchtime and will I be in a place I can find something to feed her? If we are out for lunch and dinner then it’s more problematic because then you have two meals to think about. And even if you can take something from home for the first meal she wants to eat a proper meal for the second. If we fancy having a night off and have a take away then I either have to cook for her anyway or buy one of very few things like M&S children’s Meaty Pasta to feed her. When we are out in a restaurant, the menu having already been checked carefully for possibilities of things she can eat, we then enter into detail discussions with the waiter of how they are cooked, butter, sauces prepare from scratch, do they have Worchester sauce in their sauces, is there eggs in their sausages, does their sorbets have egg whites? And even when you have picked the right thing, then you enter into discussions about how the chef can not use the same tongs he used for fish in her food and so on. Once in an Italian restaurant chain we had chosen tomato sauce, Gabriela ate the first mouthful and then the waitress rushed to the table to tell us she had forgotten to tell the chef not to sprinkle parmesan on the sauce. I hate when people who are intolerant to foods say they’re allergic because most allergies are life threatening, food intolerance like my aunt and I have to dairy just make you feel really bad and you’ll suffer but they won’t require you to carry an epi-pen around with you. I love dairy products so much that I’ll keep making myself ill now and again because the discomfort hasn’t outweigh the pleasure of the five minute joy devouring that hot chocolate pudding with melting cold ice-cream over it, and I hope it never does.
Going out anywhere to eat with Gabriela is not a relaxing experience, you’re always relying on someone who you never met to carry out in a busy kitchen something you take great care and attention to prepare at home. Food labels are a minefield, sometimes they can be too vague, and my shopping time takes twice as much time as it would because I have to read every label even on products I often buy to make certain they haven’t changed the ingredients like they did recently in walker’s crisps, the salt & vinegar flavour, they decided to add milk! We are lucky with the milk allergy because she does not have the same severe reaction she does with fish, nuts or sesame. Sometimes at home when buttering the other children’s toast I forget what knife I’ve used for what and then you start again or which wooden spoon you used for what food, although you’re well rehearsed there are always times your mind is absent. Mother’s day fell in the same day as my oldest daughter in 2009 so we decide to go out for lunch somewhere different for them, and booked a table at One Aldwych Hotel in London. That was probably the first time I felt relaxed eating out with her, they were excellent with their attention to her, she felt like a princess and loved the food even the fruit salad she didn’t want to stop eating it and she’s not that keen on fruit salad at home.
Gabriela Living With Her Allergies
Gabriela was doing well until the age of about 9 years when she then started to feel ill with more frequency than before. Occasionally Gabriela would spend from the time she woke up until she went to bed throwing her guts up, she heaved so hard with her stomach being empty it has nothing to give but the yellow mucus lying in its bottom. And this would be accompanied by a severe headache. We would attribute to something she had to eat but couldn’t pin point to specifics. She would also suffer from the biggest mouth ulcers you’ve ever seen a little mouth have, on lips, inner cheeks, tongue, the size of thumb nails. She had one once, in her gum so large you could see it had swollen her chin and neck on the outside, but even this the medical profession at the A&E didn’t consider a problem or do anything about. Other times Gabriela would throw up unexpectedly and again we would not have a clue what would cause it. I stopped putting red wine in my Bolognese sauce because she had this reaction once and I’ve subsequently discovered some reds can have eggs or fish in the process of being made. When Gabriela was becoming aware of her differences from other children she would occasionally complain and turn to me or her Gran and say, “why am I like this? Why do I have to have allergies? Why can’t I be like all the other kids?” I remember her in our first skiing holiday crying on the toilet because the hotel had given her spagetti containing eggs which made her ill, saying, “It’s not fair I have these allergies, mum, why do I have to be like this?” What can you say to her other than agreeing with her it’s not fair, she doesn’t deserve it and I wish I could have it instead of her, then point out all the good things that she is good at, how no one knows just by looking at her she is different and and and well…what can you say? Just lots of hugs and kisses….
As a young kid you hate to be different and stand out from the crowd. You don’t want your lunchbox to look different. Others to make fun because you don’t have sandwiches like them and instead you have cottage pie. Now she loves taking leftover dinner for her lunch when she’s bored with sandwiches but she’s older and more confident to explain. One of the hardest thing was going to children’s parties, there was nothing she could eat most of the time, and she could never have a piece of birthday cake but we just got into the routine of taking her own food of plain crisps, little sausages, biscuits and her sweets to share with others. She was happy when she converted her friends into liking dark chocolate rice crispies or her biscuits that tasted as good as any.
Gabriela’s History Part II
Gabriela’s Problems Didn’t Stop With The Allergies
As I’ve said Gabriela started to get worse from the age of 9, and through being ill she started to miss school quite a bit. She is an average child at school and her weak subjects like maths suffered, it was only with the help of her teacher Miss Long who was great with her and pushing her to the extra maths lessons before school started, a bit of extra home tuition by a friend’s daughter Nirvana that she manage to stay on track and do better than expected. On the 1st of March 2008 Gabriela had her first seizure, it came as a great shock to us and at first we thought she was having an allergic reaction to something so I put into practice what I’ve been fearing to do for 10 years and stabbed in the middle of her thigh the epi-pen needle far too hard causing the needle to bend slightly and bruise her thigh.
After blood tests, MRI scan, EEG and one or two others it was determined at first she has what they call an anomaly, dictionary translation: ‘an odd, peculiar, or strange condition, situation’ on her right side of her brain. The neurologist consultant at the local hospital had very little time, too little in fact to sit down with us after joining our consultation with the registrar and make us understand what we couldn’t understand, what this meant, what this was, he stood the whole time like he was in a hurry. He wanted us to give her epilepsy medicine but we couldn’t get our heads around what was going on or felt like we understood why this child at 10 started to have seizures.
After back and forth with unsuccessful referral letters to a specialised epilepsy centre we ended back in Great Ormond Street for a consultation and there we were told she has damage to the middle cerebral artery in her brain, we apparently have three arteries in our brains and she has significant damage to the middle one. When the consultant looked at her scan he told us it was unbelievable seeing Gabriela in the flesh and looking at her scan being the same person. The scan showed what you and I would understand as damage after a large stroke, they think shortly after birth and this damage was caused through lack of oxygen. This damage would normally have all sorts of consequences with mobility, use of left arm, balance, the ability to participate in sports and others I don’t remember. The child the consultant couldn’t believe was in front of him was one that can ski, roller skate, ice skate, swim, windsurf, plays the guitar, has played football, all things she shouldn’t be doing let alone doing well. I had watched a Horizon program stating it’s believed children’s brains under the age of three can compensate for damage caused that the adults would find hard to do once our permanent connections are made and fixed in the brain. It has occurred to me whilst writing this that if the development matters before you’re three then I’m so glad I fought so hard to have Gabriela’s eczema under control at 8 months because it enable her to proceed like a baby and toddler should giving her the best chance to be normal.
During that consultation we were also told the type of seizures Gabriela has, first thing in the morning before she wakes up are not good ones in medical terms and we have to get the seizures under control, we were given highly serious consequences if we didn’t get them stopped. I think I’m still not over that and my ‘umph’ for life has been damped a bit, I’ve been needing my own mum ever since. I’m hoping she’ll be here in a month’s time. This news was in the summer 2009 and Gabriela was about to start secondary school and a big change in her life and adjustments to make. If we were going to give her epilepsy medicine I wanted her to settled at school first to figure her way around, to get use to the sheer volume of work and for us to know what is normal for her without the drugs because they’ll have their own side effects which I would like to pay attention to but first I need to know what the base line is.
Gabriela’s seizures seem to be triggered by tiredness after a period of time, lack of sleep and good quality sleep. Days before she has one her face will start to look tired, she’ll start to complain about waking up in the middle of the night, not being able to fall asleep and when she does she won’t have rested sleep. We’ve taken the laptop away from early evenings for her brain to have down time. We try as much as we can to make her rest, it is not always easy keeping your radar on a 11 year old when you have a 2 year old with problems.
Maize is a big problem for Gabriela and apart from making her ill we do wonder if it can trigger some of her seizures, this is unproven but I have a gut feeling sometimes her seizure are not just tiredness and when they co-inside with the throwing up and severe headaches it makes me suspect.
THE YOUNGEST CHILD’S HISTORY
On her second day
Two and a half
Liliana was born 9 weeks early weighing 1.8kg 4lbs apparently a good weight for 31 weeks. What I remember most about the first few days was she had no eyebrows and you couldn’t see her eyelashes. There were no clothes that would fit even the pre-mature clothes you could buy were too big, the only thing that fitted was the hand made knitted hats the hospital provided. She looked so fragile you were afraid to touch her. She recovered very well and quickly, was able to breath by herself on the second day and was out of the primary care unit within a week and able to come home within 4 weeks. The first few weeks were hard and exhausting on both of us and looking back I’m not certain I did my body any good by breastfeeding because with everything going on I think I tired myself out too much.
Her Infected Hemangioma
The first year was incredibly hard because she kept getting ill picking up virus easily and the biggest problem we faced that year was one of her hemangioma getting infected. Hemangiomas also known as strawberry birth marks, are very common in pre-mature babies and most of the time they cause no problems and by the time the child is 5 or 6 years old they should disappear and all they will be left with is the loose skin which can be repaired by plastic surgery. One of Liliana’s hemangioma was in her nappy area and unfortunately the skin broke and got infected. This caused a huge problem as no doctor, hospital consultants or private child dermatologist knew how to treat an infected hemangioma. She was in so much pain from it and most of that pain created by these doctors giving her the wrong antibiotic cream to put on the hemangioma as these creams contain alcohol making it sting. Eventually we manage to take control of the situation by demanding she was admitted by the local hospital and treated with the seriousness her hemangioma deserved. Hemangiomas are a cluster of blood vessels connected to the rest of the body and if Liliana’s infection was allowed to carry on it could cause septicemia, blood poisoning. We had tried to research on the internet about it and although there were lots of parents with similar problems no one seem to have the answer.
Finally we had a consultant in the local hospital who on doubting his own prescription for yet another antibiotic cream (containing silver and would’ve made it worse) for the hemangioma had the good sense of ringing Great Ormond Children Hospital and ask the doctors who deal with this sort of thing every day. That had to be the simplest and most effective course of action made by a doctor, a doctor who had the good sense to question himself and be secure enough to ask those that would know. The treatment for the infected hemangioma was simple enough but require a cream and three types of dressings that had to be changed twice a day and then once better to once a day everyday until the skin repaired itself again. We had to carry out this procedure on three different occasions as the birthmark kept getting re-infected on different parts of it.
Liliana’s struggle unfortunately didn’t stop there. She had a severe squint in both her eyes and after consultations and soul searching we decided she should have the operations while young and before she was old enough to recollect it. It is a simple procedure and now looking back far more nerve racking for the parents than anything else. It was a half hour procedure and the brilliant eye consultant explaining in detail exactly what was going to happen putting my mind at rest, once I realised her eyes won’t going to be touched and it was just the nerve above them she was going to touch to stop the eye from being pulled too much I was reassured this was the right course of action. Her eyes are far far better than they were, she still has a squint now and again but not the pulling to the side she had before and it’s mainly when she is tired. With the glasses she has to wear to her longsightedness it helps her eyes further by making them focus centrally.
With a pre-mature baby no one can tell you what difficulties they’re going to encounter as they develop and we are lucky that she has managed to develop nearly all her functions as she should. Her biggest hurdle from the beginning has been her legs and the connection between her brain and leg muscles. Her consultant had informed us that the brain damaged caused by the lack of full development meant Liliana did not have the natural instinct to walk like the rest of us. It was something she would have to learn through intelligence rather than instinct. She is now 2 and a half years old and all her peers can walk and I feel for her because she is now missing out on play she can not participate with them, like kicking a ball or running games. Her mobility is very stiff, she can walk holding on to your finger or by holding on to furniture but the walking is laboured, slow and she looks uncomfortable doing it. She can walk up the stairs aided but half way up she will get tired, her legs muscles are weak.
We have been give a special walker by the hospital so she move herself around when out playing with her friends, at firs she was crazy about the walker but we have noticed she’s no longer that keen to go on it. We are waiting for some plinths to be made for her that will support her legs between the ankle and the knee giving her some stiffness in her legs and hopefully giving her confidence to stand by herself, the first step in walking.
To Compensate For What She Can’t Do
Oh my goodness, Liliana may not be able to walk but oh can she talk! Middle child was and is chatty but this child overtakes by superhighway. And along with the chatter comes bossiness, she loves nothing better than telling others what to do, I say along with her bossiness, temper and dogged determination she takes after Bikerboy and in turn he says she takes after me. When she’s in the car she likes to tell us how to drive, she’ll say,”mummy be careful mummy! Be careful down the hill, MUMMY BE CAREFUL! Mummy, Mummy drive careful! MUMMY!” but even after responding many times and reassuring that I’m driving carefully she’ll say,”Mummy not listening!” or she’ll say,”Mummy what you doing?” and I’ll explain we are stopping at traffic lights waiting to turn right and she’ll say, “Not that way mummy, this way..” pointing to the left where the cars on the left lane are continuing, and I’ll explain we have to turn right and wait here but not being happy she’ll say, “No mummy, not that way, this way…cars this way!” pointing to her left.
She bosses her sisters and her Grandad around no end but I think it’s this sheer determination that has abled her to do so well and achieve milestones from her adverse beginnings. Liliana was diagnosed on 25th January 2010 as having mild cerebral palsy. I’m keeping a diary of both girls progress in the ‘Kids Diary’ page.
After she came out of the primary care unit
With her Grandad Roy a week after being born
On her way home
On her first brithday
THE OLDEST CHILD
So right here at the bottom of the page we talk about the oldest child after the lengthy details of the her two younger sisters we finally come to Claudia, and thus the problem. Claudia always comes last. From the moment Gabriela was born right through Liliana’s arrival Claudia has had to take a back seat. This doesn’t mean to say that I or anyone else in the family has not given her attention or treated her equally but inevitably conversations between family members, friends and strangers you come into contact with are mainly about the problems of her siblings. She’s not only had to watch her sister Gabriela’s pain and suffering over the years, then the problems of her baby sister when she was born but also our heartache and our sadness throughout these events.
She is a very kind, extremely sensitive girl and very protective of her sisters if we’re out of sight. Yes she squabbles with her sister Gabriela like normal sisters do, sometimes go a whole day of bicker and arguments but they’re incredibly close and if either is away on a trip the other will pine. Just like the disruption we’ve had Claudia has also had to ensure disruption to her life too. Emergency ambulance calls at all sorts of hours, middle of night panics, if her sister Gabriela has a seizure I have to wake her up so she can look after her younger sister and many other occasions when circumstances forces her to be involved with her sisters’ problems.
She has by in large, taken it in her stride but we started to see signs of her behaving out of character last year that was worrying. She’s not the sort of teenager to talk about how she feels very easily, she’ll talk no problem but it won’t be about her feelings, from an early age she has kept her emotions to herself and we think this plus the beginning of her revision schedule for her exams over the next two years caused her to stress and behave unlike the girl we know.
She shows an incredible commitment to her music which came out of the blue all of the sudden when she was 11 years old. We had a piano in the house and she started teaching herself to play and asked for lessons but because previously she had also asked for horse riding lessons and then if was a skateboard and whatever the fad was at the time, I said she could have them if she showed commitment by the time her birthday came around. She carried on showing a talent for the piano and with a few lessons she picked it up well. It has been a pleasure listening to her progress over the last couple of years. She’s very modest about it and will tell you it doesn’t come easy to her and she has to work hard at it and she’s right. She does work hard at it. At every opportunity she will be practicing, be it 5 minutes before breakfast, 5 minutes after school, again before dinner and before bed, she’ll always be around the piano. I’m very proud of her for that. It doesn’t matter if she doesn’t play it when she’s older, although I can’t imagine her not to, I’ll always have great admiration for her because of the commitment she’s shown.
She’s very witty, and comes out with classic one liner’s that are very grown up and observational for someone so young. Up until quite recently her shyness has stopped her from participating more with people outside her circle but we’ve seen her trying harder to overcome her shyness. She’s began to be the chatty funny person with those she doesn’t know well as she is at home.