Life on the Other Side..

This an article I have written on the advice of Isabella’s Physio, it will hopefully be read by the professionals that deal with Isabella and who knows who else….I copied relevant parts from my blog..

Life on the other side…

I am Mummy and Full-Time Carer to a delightful 2 year old girl who has an undiagnosed medical condition.  At a young age she has already undergone an MRI Scan, Lumbar Puncture and several blood tests,  all of which to date have come back normal. It has left the medical professionals dealing with her puzzled, as she is severely disabled and delayed in her development, but there is no answer as yet to indicate why.

Living with our daughter’s condition is hard work, as she requires around the clock attention in the day, as she cannot do anything for herself. She cannot walk, talk or even sit unaided, despite all of this she is the happiest girl I know. I say it is hard work, but I love it and it is enjoyable, and I wouldn’t have it any other way. Living with her condition isn’t stressful; it is actually the professionals and the so –called system that we deal with that make life stressful for us. It was suggested to me by one of the professionals that deals with my daughter, (after another one of my rants) that I write an article to try and make the professionals understand what life is like from a parent’s perspective.

The only way for you to truly begin to understand is have a certain amount of ‘Empathy’ – the power of understanding and imaginatively entering into another person’s feelings. Put simply putting yourself into my shoes – the shoes of a parent of a disabled child -a disabled child without a diagnosis.

Whether the professionals choose to read this, let alone take on board what I say remains to be seen, nevertheless I will write it in the hope that someone listens and begins to understand what life is like and may be start to make changes for the better.

E xplain

Over the last 15 months we have had lots of communication with professionals regarding our daughter including; several meetings, appointments, visits, letters and phone calls. Most of which have not been very clear. A lot of times I have looked on the internet for clearer explanations or even asked fellow Mums who are in the same position, to explain, as they have already been through it. I understand that time is limited and the number of patients seen is vast, but just a few lines in plain English would make life easier. So much unfamiliar, medical jargon and terminology is thrown around and it is hard to keep up.  Then at other times the information is not unclear, it is just not there.  For example we had been waiting for what seemed like an eternity for test results. We received the letter which was two lines stating that the results were normal and we would be seen in 6 months!  It would have nice to tell us what was going to happen next. It is hard enough not having a diagnosis for our daughter, but made harder when it feels like we are being left in limbo. As parents it feels like there is no urgency, no-one is any hurry to find out what is wrong with our daughter.

M anage

Our daughter has a team of professionals that make home visits. This I feel needs to be managed better, as I was surprised when I found that they don’t communicate with each other and that any test results are not communicated to them either. It surely would make sense for them all to work together and know how each other support my daughter. As well as being up to speed on where we are on my daughter’s diagnosis. What was even more surprising during a recent meeting was we were asked who my daughter’s physiotherapist was! Communication has always been key in any situation.

Added to this I think it would be better, if as parent’s we were more involved in the managing of our daughter’s care. I feel that we are given equipment for our daughter without being able to give any input. Granted we are not medical professionals but we deal with our daughter every day and know her preferences and likes and dislikes. We also have the benefit of speaking to other families in the same position, who can make recommendations and suggestions based on their own experiences.

P rofessional

I pinned all my hopes on the professionals that would be dealing with Isabella having the answers to all the questions I had. Sadly I was disappointed, as most of my questions were not able to be answered. Some of the questions were about items I wanted to buy for my daughter. I had actually held off buying them, as I thought the professionals would know best and could point me in the right direction and make recommendations – they couldn’t.  May be it’s me and I expect too much and my standards are too high.

High Standards are something I always have had. I am a Primary School Teacher by trade. No matter what job I have undertaken from being a Travel agent, a Holiday Representative to a Holiday Entertainer, I took it seriously and would make sure I did my upmost to give the best possible service.

When I was a Travel Agent I would treat every customer and holiday enquiry like they were the first of the day. I would listen and make sure I found the best holiday to suit their needs. It didn’t stop there however, I would try and remember their names when they came in to make payments and even if I was overworked (it wasn’t for them to know) I would always smile and give great service. When the shop closed at 5pm I wouldn’t leave until all the customers I promised to call back had been. Even when I got home I would watch holiday shows and programmes to build up my knowledge. I even dragged my husband around different hotels when we were on our own holiday, so I could go back and tell customers of my first-hand knowledge! Doing the best and going the extra mile is something that has been instilled in me from when I was little. I was never trying to outdo anybody I just want to give the service that I would expect to be given.

The same can be said for when I was teaching. I know society think teachers are overpaid, have it easy and get loads of holidays, believe you me, we earn and deserve those holidays. Contrary to popular belief we don’t stop working the minute the bell rings at three. I, (like thousands of teachers do) didn’t leave school until 5.30 and then took work home with me; I would work weekends and at times until the early hours of the morning! I am not telling you this to brag, I am telling you this to make you understand that I loved my job and wanted to make sure that I was doing the best for my pupils and my school. So I guess I expect other people to do the same in whatever job they undertake. For me anyone who works with children should want to do the best by them, if not they are in the wrong job.

I have also found when we go to appointments that we have been waiting for months on end, that the professionals we meet aren’t always prepared, it would be advisable for them take a few minutes before we come in to familiarise themselves with our little girl, by reading through her notes.  That way they will avoid coming unstuck and asking questions that are glaringly obvious. It is important to remember that they see lots of us parents and have lots of appointments, we on the other hand see them and it may be only once or twice a year for an hour. So you can imagine it is something that we look forward to and we hope to get a lot out of it.

A dvice

It became apparent very quickly that life would now involve a lot of waiting; waiting to be seen by professionals, waiting for appointments and waiting for equipment. With this in mind it would be useful for professionals that know that there will be long wait for certain things to have contingency plans. This may mean doing a little bit of research on the internet to find an alternative item to fill that gap, whilst waiting. Trust me as parent, having someone tell you unfortunately you may be waiting sometime for this piece of equipment would be extremely frustrating, but being offered a suggestion that could be used in the meantime, would be greatly appreciated. As a parent you would feel like you and your child are really cared for.

Similarly it would be useful if the professionals were more knowledgeable and able to offer suggestions and recommendations on new equipment and resources. As parents our time in the day is taken up with looking after our daughter, a lot of the time our evenings are taken up to by researching new equipment and resources.

T ime

After finally being referred, it took 8 months for my daughter to be seen by a Pediatrician. That was 8 months of worrying, 8 months of living in the unknown, 8 months of awkward questions from strangers and family members; ‘Oh is she not sitting yet?’ ‘Can she not feed herself? ; In short 8 months of agony.

I truly believed that when we were finally seen we would get the help and support that was needed and quickly. How wrong I was. After an 8 month wait to see a Doctor, there was further waiting involved to see the individual therapists who would be helping my daughter. I know that the NHS is in desperate need of money and is understaffed, I get it. I certainly don’t blame the individuals, as their case loads are big enough and I guess we were seen as quickly, as was physically possible. But as a parent desperate to get your daughter the right support, waiting is extremely frustrating.

H elpful

Most of the professionals I have met or dealt with over the phone I don’t find particularly helpful. In my experience the majority of professionals I have spoken to on the phone are short, unhelpful, blunt and on occasion very rude. Manners, unless I am very much mistaken don’t cost a thing. I am not expecting the person on the end of the phone to become my best friend, just to speak to me in a more pleasant way would be nice. I appreciate hospitals and Doctor’s surgeries are very busy and they probably have a lot on, but that is no excuse for being rude.

I am a firm believer in Mum knows best, but sometimes I feel that with some professionals that is overlooked. I spend all day with my daughter and know her inside and out. I know when she is happy or sad and hungry or tired.  I know all of her quirks and mannerisms and I certainly know when something isn’t right. So nothing annoys me more than when I raise a concern and it is batted away without a second thought.  I am trying to help you help my daughter. For example I had to practically beg to get my Daughter referred to a Paediatrician! It is extremely important for parents to be listened to. We may not be medical professionals but we are professionals of our children.

As a parent of a disabled child I am not asking for or looking for sympathy, but again will say that empathy would go a long way. On many occasions we have spoken with professionals who have bluntly told us, that we may never find out what is wrong with our daughter, she may never may never be able to do this or that. Just stop for second and think how you would feel if someone told you the same thing about your child, matter of fact like telling you what they had for lunch. It is not a nice feeling believe me.

Y o-yo

To finish I will state that there is no consistency in the system. It fluctuates. On speaking to other parents from different parts of the country some have great experiences, others not too dissimilar from ours. The service we get should be the same wherever you go, but at the moment that is not to be expected.

Sadly from all my experiences over the last 15 months I no longer have any high expectations. If my daughter is due a new piece of equipment, I no longer get excited until I see it, as I know the wait will be a long one. If we are due for a Home Visit I expect whoever is visiting to be late and ill prepared. If we go to the hospital I expect to kept waiting for hours, without an apology or acknowledgement. If we are due test results I don’t expect to receive them promptly as promised, I expect that I will have to make a call to chase them up. If I have to make that or any other call I expect to be kept waiting. If I do finally speak to anyone I expect them to be blunt, short and uncaring. I expect all of these things because that is what has happened time and time again and if by chance it wasn’t as I expected, it is then a bonus.

I hope in some way this makes any professional understand a bit more about how it is on the other side. I haven’t gone into specific situations, but there have been several which were very stressful. I hope that from reading this, may be some changes, however small will be made.

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I’ve got the music in me…

Isabella has been immersed in music from the minute she was conceived. I am a huge fan of music and will always have music on in the kitchen whilst I am cooking and like most people when I am driving in the car. I also love TV music channels or the radio on in the background when I am cleaning around the house.  Depending on the song I am may be dramatically dusting on my hands and knees, arms outstretched and face equally  theatrical, imagining I am the fourth member of Boyz II Men.  On the other hand I may be crazily jumping around whilst hoovering and wiggling my wobbly bits to a dance number.  Sadly my love of music means I am also a dreaded shower singer. I love nothing more than the sound of my voice bouncing of the bathroom tiles, whilst I am showering. Bathroom acoustics are the best, they make you think you sound like the legend that was Whitney Houston, in reality however I probably sound more like the late Whitney Houston’s cat! So my love for music probably explains Isabella and her own love of music. Having said that now that I have Isabella the dramatic hoovering is now more of a quick whizz around the house and sadly I am not really in the shower long enough to belt out a couple of verses let alone a number!

Isabella responded to music in my tummy with kicks and she still does the same today. When she hears music she stretches her arms out, kicks her legs and squeals with delight. Just the mere sound of music makes her smile and her eyes light up. Even the simplest sound of a bell ringing catches her attention and makes her eyes dance. Put simply Isabella loves music.

I remember when I was pregnant with Isabella I would listen to a variety of music from the Grease Soundtrack to Michael Buble and everything inbetween. In fact my taste is music is very broad, I like music of old like Dean Martin to more current artists like Eliza Dolittle. I know that when I was reading baby books they all stated how music was important to babies, so I was already on the right track and didn’t need to do anything more with regards to music.

When Isabella was just a few weeks old I bought her nursery rhyme cds and played them to her in her nursery and in the car. The songs were unexpectedly addictive and we found ourselves singing them when Isabella wasn’t around. Isabella loved listening to any type of music, but in particular her Nursery Rhymes, probably because she was familiar with them. You could see it in her eyes when she recognised the start of song and it was lovely to see the smile that followed when the song kicked in. This is something she still does today, her eyes open wide and she smiles when she hears the first few notes of a familiar song and then her arms and legs follow excitedly.

It was very apparent with her reactions to music that like her Mummy, Isabella had a for love it. I remember taking her to her first sing and sign class she adored it. I bought the CD’s so we could practise the songs and signs at home. The CDs were played at home and in the car. They worked a treat when she had enough in the car and would be bordering on a meltdown, no sooner had we pressed play she would be laughing and kicking her legs happily. Sadly now that she is a little bit older that trick doesn’t work as well as it used to!

Because of her love for music and the pleasure it gives her we try to engage and immerse her in as much music as we can. It truly is a joy to see her relax and enjoy herself when she is listening to music.

The O’ Jays song ‘I Love Music’ has some very apt lyrics;

I love music

sweet, sweet music,

long as it’s swinging

All the joy that it’s bringin’

We go to three music classes a week; Saltbox, Sing & Sign and Kindermusik and Isabella gets excited when we arrive at any of the classes, she looks around the room and you can see her registering where she is and smiling, as she knows what is coming next. We have all the CDs from the classes we attend so we can teach Daddy the songs and recreate the classes at home. We even sing songs in her Water Babies swimming classes. Added to this we sing songs during her morning exercises and we have songs for her brushing her teeth and her hair! In fact we jave somgs for most of our daily activities. Then to occupy whilst I am preparing food or washing up Isabella watches the ‘Singing Hands’ DVDs! In fact there is not much of the day that doesn’t involve music. Isabella even has a night time mobile that plays lullabies whilst she drinks her bottle. Given all her difficulties Isabella like I have said several times before is one of the happiest little girls that I know. Music is the one thing that Isabella can enjoy without any hard work or effort.

Isabella certainly has the music in her. The lyrics say it all;

I heat up

I cool down

When something gets in my way I go round it.

Don’t let life get me down

Gonna take life the way that I found it.

I got the music in me

I got the music in me…………………

The bigger picture…

I find it really frustrating when people take things that we may do with Isabella or Isabella does, personally. Since Isabella was born and prior to her condition making itself known, we have always placed an emphasis on routine and with Isabella it works. Isabella has been in a routine of dinner-time, play-time, bath-time and bed-time since she was four months old. After her bath Isabella is always ready for her bottle and her bed and on occasion if it has been a busy day sometimes her bath has to be pushed up because she is tired. For that reason we don’t tend to take Isabella out at night and we rarely have her in bed later than 8pm.

Like most people when they are tired, Isabella becomes grumpy. With this in mind we have declined evening events in the past, such as family parties or celebrations. As well as being a little lady who likes to be in her routine, Isabella also is not great with strangers or big crowds of people, as she becomes anxious, nervous and very stiff. She can also get very easily spooked in unfamiliar situations or where there is too much going on.

So bearing this in mind when we visit friends and family we try to get Isabella used to her surroundings first; both the people and the place. We just give her time to adjust and understand that she is ‘safe’ here. We walk around the place and talk to our friends and family members that are there, so Isabella can see that its okay here.  It normally doesn’t take very long and Isabella soon recalls that she has been to this place on previous occasions or that she is okay here and she slowly begins to relax. Then when she is ready she will go to people for cuddles. Very often however, before this is allowed to happen, over eager family members will snatch Isabella and take her away from her constant, ie Mummy and Daddy. Very quickly she becomes upset, as Mummy and Daddy are out of sight and she is not familiar with the person she is with or her surroundings.

Usually Isabella can be calmed down very quickly, if she is passed back to Mummy or Daddy. It doesn’t take long for the few tears to shift rapidly into meltdown and inconsolable crying. This then will set the tone for the duration of the stay, so it is best for all concerned for Isabella to be calmed down by either Mummy or Daddy.  But certain people cannot see this. They see that by handing Isabella back they have ‘failed’ and that Isabella ‘hates’ them! So they continue to try to calm Isabella down, but this only worsens the situation and Isabella becomes even more upset.

Isabella is very expressive and will let the person know that she is upset by frowning at the person in question and looking for and smiling at Mummy or Daddy. This only intensifies the already stressed situation and it is usually followed by a  further, ‘See, she hates me!’. I find this incredibly frustrating, as people make the situation concerning Isabella about them. They can’t see that Isabella likes things done in a certain way and is not keen on change.

We have always maintained from the very beginning that we don’t want Isabella treated differently, for example showered with unnecessary gifts or given special attention over her cousins. Having said that there is an element of special attention needed when dealing with Isabella, such as being aware of what she does and doesn’t like and tending to these needs.

Isabella is now 2 and if she was running around and talking she would be able to tell people, ‘No’. I recall on many occasions when my nieces were smaller and I would ask for a cuddle they would tell me, ‘No’ and run off playing. I didn’t take it personally, as usually they  came around in their own time. Isabella doesn’t have the luxury of being able to walk away from a situation she doesn’t like or say no, she will communicate in the only way that she can, which is crying which lets us know that she is unhappy.

The fact that she is not walking and talking I think confuses people and clouds their judgement of Isabella. They still see her as a baby, which she is  most definitely not. Physically in what she is able to do she at the developmental age of a five month old, but congnitively she is much closer to her chronological age of 2. Some people still babble and coo at Isabella and speak to her as if she were a baby, much to our annoyance. This is something that we don’t do with her, as she most definately understands and responds wonderfully in her own way when you speak to her normally. When I say normally I mean the manner in which you would speak to a two year old, not how you would hold a conversation with an adult.

Isabella is a very clever and determined two year old and knows what she wants. She has learnt to communicate with us by eye pointing and reaching out for things. She is extremely facially expressive and vocal when the need arises.  All Isabella needs is for people to engage with her and be patient with her. It is important for people to understand that Isabella needs to feel ‘ safe and relaxed’ in her environment. Isabella cannot do anything for herself. Isabella doesn’t need sympathy she needs a certain amount of empathy. People need to put themselves in Isabella’s position, if she is in an unfamiliar environment and with someone new or not as familiar she needs time to adjust to the situation. Isabella needs to feel safe in the knowlege that who ever she is with  knows she cannot walk, talk or feed herself. Isabella needs to feel reassured that this person understands her and will cater for her needs. In short people need to remember that things in life are not always about them and they need to see the bigger picture.

The way it should be….

I still think back to the 7th March when all my fears and worries were confirmed in the Paediatrician’s office and the Doctor telling me all about his team of specialists would be put into place and that would work with Isabella. As we left his office I recall my Dad telling me that it will be good, as now there would be special groups for Isabella geared towards her needs, groups with other children like her. Although I was anxious about what was ahead of us I felt better, as I would now no longer be alone and I looked forward to meeting these professionals and accessing these special groups for Isabella.

As I mentioned in previous posts some of the professionals we have met have left me feeling disappointed. See < So tell me what is it you do? > and as for groups you only have to read < Boot Camp for Babies> to understand that the way I felt just over a year ago has changed significantly. In March of last year I pinned all my hopes on these so-called professionals and had high expectations of what they could provide Isabella. Now sadly I don’t hold much hope with them and my expectations are anything but high.

If Isabella is due a new piece of equipment, I no longer get excited until I see it, as I know the wait will be a long one. If we are due for a Home Visit I expect whoever is visiting to be late and ill prepared. If we go to the hospital I expect to kept waiting for hours, without an apology or acknowledgement. If we are due test results I don’t expect to receive them promptly as promised, I expect that I will have to make a call to chase them up. If I have to make that or any other call I expect to be kept waiting . If I do finally speak to anyone  I expect them to be blunt, short and uncaring. I expect all of these things because that is what has happened time and time again and if by chance it wasn’t as I expected it is then a bonus. Sadly I haven’t had that many bonuses.

So perhaps with this in mind you can now imagine when Isabella’s Speech and Language Therapist (SALT) told me she was going to set up a special sensory group I wasn’t expecting anything much. To be honest I wasn’t expecting it to even get of the ground and that it would just remain a suggestion. She wanted to start the group as she couldn’t believe that there was nothing local for myself and Isabella to go to, that focussed on Isabella’s needs. I explained that there was a group started previously in the next town along, but that very few people attended and there was no focus, it was just like a coffee morning. I did raise this point with the person who ran the group but very little changed. I personally found that my time could be better spent with Isabella taking her swimming. Needless to say the plug on the group was pulled. On hearing this she was keen to get the wheels in motion and true to her word she set the group up as promised.

I missed the first two sessions, as we were on holiday and when we went last week Isabella and I were very surprised.  On entering the room we were surrounded by several smiley faces. In fact there were more adults there than children. It was just Isabella, her friend Tyler and another little boy. The rest of the group was made up of Isabella’s and Tyler’s Physio, Isabella’s Advisory Teacher, an Early Years Inclusion Teacher and 3 assistants. The room itself was a sensory heaven, with brightly coloured walls and windows, beautiful decorations on the ceiling and an abundance of special needs and sensory toys. Isabella’s speech therapist was playing the guitar and could actually sing! Isabella’s Physio made suggestions on what body parts we could work on whilst we were singing the songs. Isabella was smiling away, as I mentioned before she loves Music! She kept looking at me smiling, letting me know she was having a good time and she wasn’t the only one.

During the hour long session we got the opportunity to go in the black out sensory tent and use a light panel to explore jelly and coloured stones. I have played with jelly with Isabella before, but there is something to be said about exploring it in the dark with a light panel, it really heightens your sense of smell. Isabella got stuck in there and was having a good feel around with both her hands and feet. There were switch operated toys namely a bubble machine, disco balls and a vibrating cushion. Isabella impressed both myself and her speech therapist, as she pressed the switch for the bubbles with such accuracy and determination.  Added to this there was a big tray with Cheerios in it, which Isabella took great pleasure in turning upside doan and throwing it all out all over the carpet. We had cheerios coming out of all sorts of obsecure places when we got home! There were so many toys and things to look at, it really was like a sensory sweetie shop! We sang a goodbye song and Isabella and I were presented with a collage of photos of the activities that we had undertaken since it was our first time. It was a lovely idea and perfect, as I try to document and take pictures of everything we do with Isabella. It was a thoroughly enjoyable session and I really hope it continues, as I know the Speech Therapist mentioned that groups had run here previously and she was surprised to learn that they had stopped, hence her push to start one up again.

Since attending the group both Isabella’s Physio and Advisory Teacher have been in touch to book their next visits and to see if we enjoyed the group. I explained that we loved it. They both were impressed with the group also and I could sense they really wanted my seal of approval on the group, as I have raised issues with them previously about the lack of groups and support locally. While I am not taking anything away from the group, it still frustrates me that we have waited over a year to go to a group like this.  There clearly is a need for this group, they have a wonderfully suitable location and abundance of sensory and special needs toys, plenty of staff and yet nothing was done sooner. Having a group like this is the way it should be and this is exactly what I was hoping for back on the 7th March of last year…..

Thanks for the memories..

I have mentioned my parents a lot throughout my posts on my blog. That is because they are a big, important part of my life and are always there for me. This blog is a special dedication to them to say ‘Thank You’ for everything and in particular for the last six weeks.  As over the last six weeks Isabella and I have a little holiday in the sun with them here in Bahrain. I am writing this on my final night and although we will be glad to get home, to our own beds, see our dog Daisy, catch up with our friends and other family members and to get back into our routine, we will definitely miss them both very much.

Most people couldn’t spend that long with their parents, but with us it just works. Don’t get me wrong there are moments where I am sure we drive each other mad, but they are far and few between. Isabella and I have our own room with an en suite. We have made it our home from home. We brought Isabella’s specialist seat over, along with her sensory toys and musical instruments and we put pictures and glow in the dark stars on the walls to give it a homely feel for Isabella. My mum even went out before we came over and picked out some other textured toys for Isabella and a stand to keep them all in.

It is our third visit here in Bahrain since Isabella was born and she loves it. The main reasons are; she feels very relaxed around my parents and enjoys the feeling of being free. You see with Isabella’s high muscle tone in her arms it is difficult to dress her and the more layers she has on the more restricted her movements become. It really is lovely to see her little toes (covered in ultra high 50+ suntan lotion) wriggling free in the sun, instead of curling up in socks and tights.

I really don’t know where the six weeks have gone! We have filled our days with a daily swimming session at the pool across the road, lunches out, shopping and walks in the sunshine and early evening strolls. We even joined local music and baby signing groups so Isabella could be around other children and not miss out on the groups we have back at home.

It has been lovely, as I have had a break too. I have been banned from the kitchen, and from doing any housework. I think I have made one sandwich since I have been here. The rest of the time my Mum has run around me and Isabella. I have tried to stop her but she just insists – I guess it’s a Mum thing! My Dad has been working most days but has loved coming home and playing with Isabella with my Mum, while I take some time out at the gym. Not a favourite pass time of mine but needs must and all that! Particularly since I have been indulging in home cooking, take away pizzas and meals out! Oh not forgetting ice-cream and donuts – well it is a holiday after all!

But all good things must come to an end and Isabella and I need to go home and get back into a routine of our own while Daddy is away. Paul is due back at the end of July, so we have 10 weeks to fill, which I don’t think will be a problem. We already have weekends with family and friends planned and are weeks are always jammed pack with groups, swimming and trips out. It will just be the three girls in the family, me Isabella and Daisy the dog! This 6 weeks however was just what we needed, some rest and relaxation in the glorious sunshine. Only problem is now we will probably going home to some grey, dismal weather!

We have taken lots of photos, eaten loads of delicious food, met some lovely people, had lots of laughs and fun and once again would really like to thank Mum and Dad AKA Nuna and Pops for the memories…we love you both very much…until next time at our place in the not so sunny UK….xx

Kiss and make it better..

I have said it before, but I will say it again, until you have children of your own you never truly understand the bond between a parent and child. When I was younger I never understood why when I went out my parents worried so much. This was back in the days before mobile phones and boy did I get grief if I got if I got in late and hadn’t phoned to say I would be. At the time I thought that my parents were giving me a hard time and I was a hard done by teenager! Now, as a parent I understand completely. Your children are part of you, you love them unconditionally and rightly worry about them. You would do anything to protect them, as it is a big scary world out there. Even now at 33 they still worry about me! They will insist it’s their job and that they always will and I don’t doubt that for a second.

Funny thing it works both ways. At 33 years old if I have a problem (big or small) I will still talk to my parents. My parents have the knack of saying the right things, although they may not always be what I want to hear. Usually after a good chat there is a resolution to whatever problem I may have had. Even now at my age a cuddle works wonders and makes me feel a hundred times better. The only time my parent’s talks and cuddles couldn’t find a resolution, was the morning we met the Paediatrician and I had my doubts about Isabella confirmed. For the first time in my life however brief it was, my Dad was lost for words. It wasn’t for long and I now think it was more a case of finding the right words to say. Although his words didn’t make it all disappear (like I wanted it to) they let me know that my parents, like they always had been would be here for us and together they would help us through.

I suppose that is that hardest part about the situation we are in with Isabella. As a mother I have that very same bond with Isabella that my parents have with me. Isabella is a part of me and I love her more than words can describe. I give her all the kisses and cuddles I possibly can, but they won’t magically make her problems go away.

I always think back to when my oldest Niece was toddling around and she would fall and cry, and only a kiss from Mummy would suffice. That one kiss and cuddle would stop her tears and she would be smiling again and continue her toddling adventure. All because of one kiss. How I wish I could kiss Isabella’s precious little arms and she would gain control of them. How I wish I could kiss her delicate little feet and stop them from curling and allow them to bear weight. How I wish I could give her the biggest kiss on lips and hear her say ‘I love you.’ The wishes on my list are endless, but that is just what they are ‘wishes.’

That doesn’t stop me kissing Isabella,  in fact it is totally the opposite. I am sure if Isabella could speak she would say ‘Mummy, please stop with all the kisses!’ So although my kisses won’t make Isabella feel better, I know that they make her feel loved. As a parent I can care for and nuture Isabella and offer her my eternal love and support. I will strive to do the best I can by her and continue on this journey looking for answers and possible solutions to help her achieve her potential. There is and there will always be however that small part of me, that still longs to ‘Kiss and make it better.’

Mum knows best..

It’s funny until you have children of your own you never quite understand what Mothers mean when they say certain things. Things like; ‘Mums just know’, ‘It’s a Mother’s instinct’ and ‘I’m Mum it’s my job’. Now I am a Mummy I understand completely. When it comes to your children you instinctively know what’s wrong with them and will do anything for them. You are no longer number one, they are and everything you do is about them. I think added to this, as the Mother of a Disabled child the insinct is heightened further, as you are your child’s advocate.

I also believe, as a Mother of any child you really do emotionally connect with your children and have a special bond. I remember when Isabella was breast-fed I would always wake up just a few minutes before she would, it was like she was giving me time to wake up. Even now if I wake in the middle of the night, Isabella usually wakes a few minutes later.

From the moment you find out that you are pregnant I really think as a Mummy you don’t ever really sleep properly again. To start with its from the excitement, then you can’t get comfortable and need to wee about 20 times a night! Once you bring your little person home you don’t sleep , as you keep checking on them and as the months go on you still sleep lightly, as you are always on guard ready to jump into action should you need to. I will hear the slightest shuffle coming from Isabella’s cot or the faintest cough on the monitor, even if I am asleep. I will then lay quietly in the dark and listen out to see if she needs me.

I stayed at home with Isabella when she was first-born and I am now a Full-Time Carer for her. Not to stereotype, but generally it’s  Mothers who say at home with their children.(Although I do know stay at home fathers) As they spend so much time with them, they really know them inside out; their likes, dislikes, quirks and preferences. They understand their different cries and facial expressions. They know when they are ill and what best to do. Which brings me to my point; Over the last few weeks some things have got me thinking about the well known phrase, ‘Mum Knows Best’.

There is a special family that I am part of called SWAN (Syndromes without A Name) http://swanuk.wordpress.com/about/

It is a project run by Genetic Alliance UK offering support and information to families of children with undiagnosed conditions. It is a great family to be part of, as we are all in the same boat and know how each other really feels. We share our highs and our lows, our happy times and our sad times. Recently one fellow Swan Mummy posted on our group upset because they knew that their SWAN was ill and the Doctors didn’t take them seriously, as it turns out his mum was right and thankfully now he is receiving the relevant medication and is on the mend. Other Mummies have had problems with School and Nursery settings that are not right for their children, but again people are not listening to them. It really frustrates me, whatever happened to, ‘Mum knows best?’

We Mums spend the long hours in the day and night with our children, yet people see them for a few minutes and think they know best. I always think back to the several visits I made to my local GP insisting that there was something wrong with Isabella. He was sure there was nothing wrong with her and it was only after I pushed and pushed that he referred me. I shouldn’t be like this. We shouldn’t have to shout to be heard or to fight to get what is best for our children. The professionals should listen to us, so they can use their professional skills to give our children what they need. We are the voices of our children and we should be listened to. Without our voices our children wouldn’t be heard.

Water off a duck’s back…

We all have things about us that we would like to change. I am no different, like most women I have my body hang ups, but those I can deal with. The thing I would most like to change is my sensitivity. I guess it is kind of like a type of OCD. If people say something negative (or what I deem as negative)  I will either put them straight or say nothing and digest their comment and keep playing it over and over in my head.

I know that half the time when things are said it is a case of people, not thinking before they speak, feeling awkward and saying the wrong thing unintentionally or sometimes just joking, but then there is the other half who do actually mean what they say. I am a tough person and will stand up for what I believe is right, but after the event I still find myself thinking about what was said, churning it around and around.

I have always been sensitive, that’s probably why I was such a good target for bullies when I was at school. I definitely feel though that I have become more sensitive since becoming a Mummy. The minute you become a Mummy people feel they have the right to pass comment, judge and even criticise you. This is definitely more apparent now that I am now the Mummy of a disabled child. I guess a big part of me taking everything to heart and so personally is because I am protecting and defending my daughter Isabella, as she doesn’t have a voice of her own.  Sometimes it is not what people say, it is their body language and the way they say it.  I have had everything from ‘Oh okay so you are breastfeeding!’ to ‘You’re overfeeding her!’

I wish I could be one of those people who ignore what is said and not let it bother them. I can pretend I have ignored what was said, but find myself stewing over it later. Then on the other hand I don’t want to just ignore when things are said, as ignorance could be seen as acceptance and sometimes people need to be made to understand. Comments like ‘Oh she is alright.’ ‘Look at her she is beautiful, there is nothing wrong with her!’ are ones that I do not let go or ignore. However one thing I am trying my hardest to improve on is the way I deliver my responses to people’s ridiculous comments such as these. I can sound quite blunt and harsh, as usually what has been said has annoyed me. I need to work on not biting and letting people get the better of me.

 I am not silly, I know we are at the start of a very long road where there will be lots of moments where things will be said that will not be to my liking and I will just have to let some of them wash over me, like water off a duck’s back….

That thing you do..

Any parent will know how their own child has their little habits, quirks and expressions that are unique to them and make them who they are. Isabella has several and I love each and every one of them, some make me so happy and giddy inside that I could burst.

Isabella (unlike her Daddy) wakes with all the joys of spring. The minute her eyes open she babbles away for a bit and if she thinks we haven’t heard her she will kick her legs up and down in her cot, until she gets the required response, which of course is for us to go and get her! The minute she claps eyes on us she is smiling and giggling away. She cannot wait to be lifted out of her cot and start her day. That first smile, as we lift her out is simply magical and it really doesn’t matter if it is 5.30am and you are shattered. That smile and her sparkly blue eyes staring back at you make it all worth it.

As Isabella cannot speak it really is all in her eyes, facial expressions and body language. When she is really excited by something, for example a song (her favourite at the moment is ‘Moves Like Jagger’) she will laugh, her blue eyes will twinkle and she will stick both her arms and legs out straight in the air and kick her legs up and down. This is definitely one that gets me every time, it is so good to see. With so many involuntary movements it is truly wonderful to see Isabella in control.

Isabella is quite a Mummy’s girl and when she is tired, poorly or in a strange place only Mummy will do. Having said that Isabella is now getting very good at milking the Mummy Card when she is with Daddy. If Daddy is putting her to bed, I have to say my goodnight before she gets into her Pyjamas, as if she has a cuddle with me before her bottle and I pass her back to Daddy her bottom lip will almost hit the floor and she gives Paul a very sad look. She will then look back at me and smile and look back to Paul with the sad face and her eyes start to well up. We cannot help but laugh, as we know that she is pulling a fast one. She then laughs too and then looks to Paul again with the sad face. She knows that Daddy doesn’t like to see her upset so she knows she will get her own way. So to avoid the sad face when Daddy is on Bedtime duty kisses from Mummy are given in the bath!

Isabella loves tummy time and loves when we chase her. She cannot crawl but she will move ever so slightly and slowly in her own way. I only have to utter the words, ‘Oh Oh’ and she gets hysterical and starts giggling. When I follow it up with ‘Mummy’s coming to get you’, she squeals in delight and starts frantically kicking her legs, like she is trying to crawl away. As I slowly creep up towards her, she is squealing and kicking her legs the whole time. When I finally get close enough to tickle her she laughs uncontrollably. This is another one of these moments where I get a warm and fuzzy feeling and feel like I could burst with happiness.

One of my final Isabella favourites I will mention is at the end of the day when she is really tired she sometimes becomes what we call ‘Drunk Tired’. This is where her eyes are all small and red (strangely like Daddy’s after a few beers) and she will find the strangest of things funny and she will have a laughing fit, which then gives her the hiccups (another Daddy trait) The more we laugh the more she does until she cannot laugh no more.

It’s moments like these that I don’t think about what she can’t do, I don’t think about all the hospital appointments we have lined up or the therapists that are due to visit, I just think about how lucky I am to be a Mummy to such a wonderful, happy little girl.