KEEP ON TWINKLING LITTLE STAR

Some more good things have happened over the past few days.  Natalie (aged 5) has had her first school report and it is brilliant.  She has ‘excellent’ next to every subject.  I had to smile as they ask the children what they would like to be able to improve on and Natalie had said she would like to be able to draw better!   I am so proud of her.

I am also proud of Jessica who is continuing to make the right progress.  She is now seriously attempting to crawl and did actually crawl backwards just the other day for a short distance.  She also managed to go forwards briefly ‘commando style’ to her Nanny Joan.  We are still practicing the ‘four point kneeling’ position with her and I have to say that there have been times over the last few days when she has almost done this herself. 

She can now get from a sitting position onto her tummy with control and lifts her arms up straight in front of her and her head up.  Of course any parent would get excited at this stage of their child’s development but in Jessica’s case it is even more exciting as not so long ago she could not even sit up unaided. 

This brings me to another ‘magic moment’ that happened just this afternoon.  I was reading the rhyme ‘Twinkle Twinkle Little Star’ to Jessica who was sitting next to me on the sofa.  The book she has breaks the rhyme into a verse for each page (I did not realise there was more than one verse!) with a colourful picture each one featuring the star.  There are also corresponding pictures down the side which when pressed play part of the tune.  Jess loves it; it is her favourite rhyme, especially when you do the actions with her.  I decided to try and get her to point to the star as each page was turned.  I stopped reading the rhyme and just asked her to point to the star (also pointing to it myself).  I had to repeat this over and over again but I felt sure that she understood what I meant as I could see her eyes focusing on the picture.  After what seemed like quite a long time my patience finally paid off and after asking her to point to the star for the umpteenth time she slowly lifted her little arm and leant forward and touched the star!  I could not stop the tears from rolling down my cheeks as I shouted ‘well done Jess, well done’ and gave her a clap (which she loves), she gave me a big grin and looked so pleased with herself.    To the casual observer this may seem such a small thing to get emotional over but when you are involved with a child with developmental delay it is like the most wonderful thing in the world.

I am ashamed to say that I am probably not known for my patience, but helping to look after Jess has taught me so many things, patience being one of them.  I think it is also teaching me humility and an appreciation of the good things in life, which can sometimes be as simple as the action mentioned above.  Yes I would be lying if I was to say I would not like to win the lottery, or be able to buy clothes without having to check the price tag first, but I am slowly coming to the realisation that everything I  REALLY NEED is right here all around me.  The love of a family, the support of true friends, sometimes in the hustle and bustle of society today and the stresses and strains people are under, it is easy to become blind to these simple pleasures.  It is true that I seem to cry more nowadays, but they are mostly tears of happiness or joy when something as simple as pointing to a picture is achieved or tears of raw emotion when seeing a video or reading another blog by someone who is in the same situation.  I can now relate to so much more than I ever could before and it is an empowering experience.

I love this photo, taken of Natalie & Jess at an aquatic centre during half term recently.  Again, nothing special to the casual observer but they do not realise the effort that the child on the right is going through to be able to stand unaided for just the short time while the photo was being taken, how can they ever understand the feeling of joy and hope that such an action gives to her family.  Sometimes we see the picture, but not the whole picture.  Sometimes we make assumptions and so often we are wrong.  


 

A FEW SMALL STEPS FOR MAN .......

I often go home smiling to myself in the car.  Sometimes it is due to Jess and sometimes it is due to Natalie.  A couple of weeks ago Jess had her new special boots.  She had been measured for these some months ago, but like everything else it seemed to take ages before they were ready for collection.  Still, once we had them she seemed to take to them straight away.  We put them on her while she was in her standing frame and to keep her feet warm when we took her out.  They are pink suede effect and look really cute on her tiny little feet.  Soon after having them she was standing (without her frame) leaning against the sofa or window ledge (she likes to look out of the window), obviously someone had to be near to her incase her legs gave way but she was getting stronger all the time. 

On Friday, just before I was due to come home, I had Jess stand up as she had just finished her session in her standing frame and still had her boots on. I was holding her around her waist, Emma decided to record this on her phone.  We were totally unprepared for what happened next as my shriek of delight (in my Black Country dialect) at the start of the video confirms!  Jess without any help took her first step!  We could not believe it, but then followed another and another - I helped on one occasion by putting her one leg forward and tapping the other one but the steps she took were done all by herself and she was loving it.  Nanny Joan arrived with Natalie just as the video ends and Jess was able to show her other Nanny and big Sister her new skill.  

So that is why I arrived home on Friday evening with a huge grin on my face.  Those few small steps may not mean much to the casual observer but to a family who has been told that this child may never be able to walk they are huge strides..  Emma has updated her u-tube video and I have included the clip so that you can share this magical moment. Please click on link in blue below. Oh and I shan't be offended if you want to turn the sound down!!

FIRST SMALL STEPS

THE STORY CONTINUES

For a time Jess attended a private nursery with Natalie whilst Emma continued with her part- time job as swimming teacher and assessor for Water Babies, a company that teaches babies water skills from birth.  This is a job she loves and she is passionate about the importance of teaching babies and young children to swim.  We all felt that it was important for her to carry on with this.  I was working for a busy estate agents, but helped out on my day off and Nanny Joan helped out on other days.  The nursery were brilliant with Jess.  The staff loved her and had even trained how to tube feed her.  Unfortunately it was obvious that Jess was going to need care on a more ‘one to one’ basis if her development was to improve.  She was now gaining weight due to the NG tube and the high calorie milk being given.  Because of the MRI results doctors were now finally taking Emma & Ben seriously and various things were now in place such as physio, Portage etc.  Natalie was also due to leave nursery to start school.  Problem was who was going to look after Jessica if Emma was to maintain her role in Water Babies.  The solution seemed clear to me.  Obviously I needed to talk it through with Hubby first due to money implications etc, but he was brilliant and backed me all the way and we made various alterations to our finances.  So end of September I said goodbye to my colleagues and friends at work and began my new role as Jessica’s carer. 

The benefits of all the physio and one to one interaction paid off.  At around 14 months Jess could finally sit up unaided.  We attend a ‘school for parents’ one afternoon a week at a special nursery which she will eventually go to pre-school.  They are brilliant people there, never looking at what a child cannot do, but always working on what they can. The first time Emma & I took Jess we were so overcome by emotion it was very difficult.  Seeing other children with varying degrees of disabilities, some unable to speak, some unable to walk, was hard.  My first thoughts were- is this how Jess is going to be, surely not, she does not belong here, she is coming on, she will be o.k.  I was just fooling myself.  As the weeks went by I realised that this was a place of love and kindness, we were so lucky that Jess was able to come here.  I no longer look at the other children with pity, I see them for what they are lovely, happy children.  They gave us a standing frame which helps build strength into her legs. She loves it.  When Emma first saw her standing in it she said ‘oh Mum – she looks like a proper little girl’.  I knew what she meant.

I am a member of a support Group SWAN uk (Syndrome Without A Name) and love being able to chat and comment with parents of other SWANS and I know that Emma has found a lot of support from the group.  I would never have believed that one day I would be a member of a Facebook group with my eldest Daughter!

Over the months Jessica has gone from being the baby that just existed in a world of her own to a happy, smiling little girl.  She babbles happily and is quite mischievous, especially when it comes to pulling out her N.G. tube! 

So it’s not always been a bed of roses.  Emma & Ben have had to fight the system for everything, but we are a family of fighters.  I once said during one of my more prophetic moments that we were all links that could join together to form a strong chain and it is true.  We will never give up.

And how do I feel now? Well to be honest, I cannot remember a time when I felt so happy and life felt so rewarding.  Being able to care for Jess and feel useful to my family has given me a contentment that I thought I had lost.  I love being a Mum, I love being a Nanny and I love to see Jessica’s smiling face when I walk into the room.  I love to see her gradually achieve the things we never thought possible.  I feel so privileged to be able to be a part of this.  I love it when Natalie comes home from school and starts telling me about her day.  She is so good with Jessica and Jessica adores her. 

People seem surprised when they ask how I am and I say couldn’t be better, life is good.  I think they expect me to be sad, even bitter that something like this could happen to my family.  Yes, if I could wave a magic wand of course I would want Jess to be free of her disabilities, life will be tough at times but we will face that together.  Emma and Ben have two wonderful daughters and consequently we have two wonderful granddaughters but the love they both get is equal.  We love Jess for who she is and as she is, no more-no less and Natalie for exactly the same reasons. Just like I love my girls.   I never try to analyse why this may have happened to us, it does not matter, we have so much to be thankful for.

So, if you were looking for a sob story sorry to disappoint.  You will not find me wallowing in self-pity or bitterness.  Jessica – in the words of the song ‘every little thing you do is magic’ and I am so lucky to be part of that magic.  At the age of 56 I am learning new skills all the time, I am meeting new people, making new friends and realising with some shame that what I thought I knew about people with disabilities and the hurdles they face was infact very little.

I am on a mission to raise as much awareness as possible, especially to help re-educate the medical profession when it comes to listening to parents – do not be in such a hurry to dismiss them as being over anxious – they may have a SWAN.

IN THE BEGINNING

The story of Jessica’s undiagnosed condition has been told already and I do not intend to go over old ground.  For those who do not know then please refer to the video http://www.youtube.com/watch?v=zvsmC9uk08Y&feature=share

This gives a brief explanation.

I have been asked many times how I feel about this and how it has affected me.  I think sometimes people are somewhat surprised at my reply.  It was suggested I write down my feelings at the time of finding out, and now – so here goes:

I knew there was something ‘not quite right’ about Jess a couple of weeks after her birth.  She looked slightly different and seemed to be in a world of her own.  There were no smiles then from her, just staring into space and attracted by any bright lights.  It worried me greatly, but how do you begin to have a conversation with your Daughter that is suggesting there might be something wrong with her baby.  What if I had said something and was wrong, after all I was basing everything on ‘mother’s instinct’, it had never let me down before but there is always a first time.  As the video explains, Emma did take Jess to the Doctors as she was not putting on any weight and did not seem to want to suck her bottle for very long but the doctor had said there was nothing wrong, perhaps a bit of silent reflux, Emma was given the impression that they thought she was just being over-anxious.  We sat at the hospital Emma & I with Jess only to be treated to more of the same.  This was so wrong.  I felt so frustrated, how dare they think my Daughter is just being over protective, she had already got one Daughter, she knew when something was not quite right.  I wanted to yell at them, demand things from them, but I knew this would not do any good and Emma was doing a good job on her own getting them to finally agree to do tests etc., without resorting to a show down.  If you have watched the video you will know that the tests came back negative and Emma & Ben paid to get an M.R.I. scan.

I will never forget the day we were told the results.  Rob and I had taken Natalie to the park and had a lovely afternoon out with her.  We went back to Emma & Bens.  Yes we had been anxious wondering what the outcome was, but nothing could have prepared us for what we heard.  After all the tests they had done at the hospital had come back negative so there could not be much wrong surely?

Her brain was underdeveloped and parts not formed.  The Consultant had said it was not good.  He doubted she would ever be able to walk, sit up or have a conversation; the list seemed to go on and on.  The Consultant had ended by saying her future was very bleak. 

It was like being caught up in a nightmare.  I just wanted to wake up and find everything o.k, but this was real.  I wanted to give my Daughter a hug but could see they were both on the verge of tears and this would have probably tipped them over the edge. Through all of this Natalie was playing happily with her toys.  She was too young to understand her baby Sister had anything wrong.  I wanted to cry but no tears would come, I was in total shock. 

We left to break the news to my other Daughter as I did not want Emma to have the ordeal of going through it again and they needed to be left alone, to comfort each other.  I finally cried with Sarah and thought we would not be able to stop.  That night I cried myself to sleep.  I felt that I was letting Emma down. I was her Mum and Mums fix things, make them better.  I could not fix this.

The next morning the hurt had turned to anger.  How dare someone say my Granddaughter may not be able to do things, how dare they say she had a bleak future ahead of her.  This was my family.  No one is going to write them off.

The telephone rang, it was Sarah, she and her partner were going out to buy sensory equipment for Jess ‘we will prove them wrong Mum’ she said.  I am so proud of my girls.  And so we decided as a family (which includes Ben’s Mum and Dad and also my Ex husband and his partner) that we would do everything we could to help Jess in her development and prove the medical profession wrong.