At 2.24am on Christmas eve 2004 my life changed forever when my gorgeous daughter Mia was born. But not in the way I had planned. Deprived of oxygen at birth, her first few hours of life were very hectic as doctors and nurses fought to save her life.  My wife had to have an emergency episiotomy and Mia was blue when born and whisked away amongst alarms, frantic doctors and a huge number of people that came out of nowhere. My wife’s bleeding was so bad, she spent her Christmas day receiving three blood transfusions and I needed to stay with her. It was to be four long hours before she and Mia had stabilized and I was allowed to up to the special care unit to see Mia.

I have always had a thick skin and an ability to cope with difficult situations by detaching from them, but when I saw my beautiful daughter wired up to countless machines with tubes and wires everywhere I felt pain like I have never felt before and promptly collapsed. My legs just lost their strength and I wept uncontrollably. How could I go back to my wife and tell her what I had seen, I thought? It was immediately clear that Mia’s brain had been irreparably damaged and her eventual diagnosis was of cerebral palsy or CP. Mia was to be completely physically disabled for life.

As each child with cp is different, we could only get broad advice from health professionals as to what to expect. As time wore on it became clear that the NHS wasn’t going to be able to dedicate the resources Mia needed. In the first year just keeping her alive was a struggle as she had major trouble with coordinating breathing, swallowing and eating. Her eating problems were so severe she was surgically fitted with a tube direct to her tummy for fluids to go straight in, bypassing her mouth as her oral coordination was so badly damaged. Her inability to accurately control her mouth and swallow reflexes also severely impacted her communication, which meant speech was going to be almost impossible we were told. We were devastated. None of the imaginings we had for our first child involved the level of illness she had, the trips to the hospitals, the operations and the sheer grief of it all. For Mia’s sake though we soldiered on, still determined to do our best for her.

The alternative communication solutions we were offered were impersonal, bulky and expensive. I thought there had to be a better way of helping Mia communicate with us. As she grew it seemed that although physically disabled, she was cognitively alert and aware. I worried that without a workable system of communication she could access easily, her ability to learn at a crucial age would be compromised.

Around the same time I got an iphone for work so I could pick e mails up when I was traveling. One night in a hotel with some time on my hands, I started looking at the Apple’s app store with the Apple slogan “apps for everything” ringing in my ears. But where was the app for Mia I thought? I couldn’t find one, but was sure I could design one that would allow Mia to communicate more with us.

Not being the most technically gifted person, I engaged a software company to build a communications app that was fully formed in my head and dealt with the communication issues I had faced. I wanted a system I could add photographs of people and objects Mia would recognize, rather than the obscure artwork other systems offered. I wanted to be able to add my voice to the app rather than some frightening mechanical voice and I wanted to have flexibility to change and edit content easily.

The result is the iComm, the app I have now launched for the iphone and new ipad. Feedback from parents with disabled children has been fantastic as they, like me, were completely frustrated with finding ways of helping their children communicate.

Then came another realization. In creating an app for my disabled child, I realized I had also created a communication device for another audience, able bodied toddlers who have not yet developed speech but have a burning desire and need to communicate. All parents of toddlers have played the guessing game when their child is expressing its frustration at being unable to communicate accurately what it wants, whilst using the one communication tool it has got, crying – loudly! Parents with able bodied children have been equally impressed with the iComm.

Doing something productive has helped immensely with the grief and pain of Mia’s diagnosis. However despite all she has been through, she is a very happy child whose laugh is infectious and inspires me to move on – whatever pain I feel around her condition. If she can be so happy at times, I feel I have a duty to deal with my own grief better. Doing something positive that other disabled children can benefit from also, has played its part in my lifelong goal of living life positively again.  

The iComm is available for download from Apples app store for use on the iphone and new ipad. There is a free version and to get the full version you can pay an upgrade fee of £15.99 to get access to all twenty categories. This also gives the ability to record your own voice files to go along with your own pictures, to help a child without speech communicate.

Go to www.miasapps.com to find out more and see a video demonstration of the app or download it today from the app store on your iPhone.

When we were first told that our son had brain damage, it did not really sink in.

The World has Stopped.

The Registrar was trying to explain to us about a baby we had not yet seen, not yet held, not yet named.

The amount of time without oxygen, had caused damage to his brain.  Ok so when can I see him?

We are not sure how much damage has been caused to his brain. Ok so when can I see him?

Why when I was hearing all this talk of brain damage was my own brain not registering anything? Why could I not take in this important information, process it and come out the other end with ‘your baby has brain damage?’ Why did the World stop for a few moments and then start again with bits of us missing.  That is what it felt like when you suddenly realise that the child you have just given birth to has been hurt beyond repair!

This is it:

1. You lie there. Unaware of the panic that now surrounds you.
   Your head bobs with each compression. Yet still you lie there.
   You make no noise, while inside I am screaming.
   You have not yet been introduced, yet Daddy’s heart hurts with love.
   I turn to him now, and wait…
   The silence is unbearable. I wait…
   A single tear runs slowly down his face. Yet still, I wait.
   I cling to hope and faith and pray that soon the silence will stop.
   You are fighting so hard, I can feel it.
   You already bare the scars of a courageous war.
   You are beautiful, perfect.
   Don’t give up now.
   Brave warriors join you in your battle.
   They heard your silent calls for help.
   They take you from this fear filled room
   And surround you with warmth and your first glimmer of life.
   Comforted by the machines that now support you,
   We adapt to our new role as spectators of your fragile beginnings.
   The rise and fall of your chest is addictive to watch
   Not daring to look away, for fear it might stop.
   Your leg starts to shake. My heart misses a beat.
   You shake all over now, and an alarm sounds.
   Once again your silence is heard
   And the brave warriors return with unquestionable vigilance.
   They fill your precious body with healing liquid
   And you return to your silent post.
   Days go by and slowly but surely your enemy shows signs of defeat
   The rise and fall of your chest is fighting against the machines
   And you inhale your first scent of life.
   We are full of emotion as our skins touch for the first time
   We cry and imprint this memory in our souls
   We stare at this work of art, taking note of every line
   Not wanting to forget a single moment.
   There is cryptic talk of damage to your brain
   I am sure that this must be wrong
   It feels unreal and we look at you lying there so innocent
   How can this angel be so perfect and have so much that is wrong.
   The tears fill our eyes as your life is unveiled
   And we hurt deep inside for the loss of a boy we once dreamt of
   But here is this child so handsome and strong
   Our purpose is clear, no more questions need asking
   He is perfect, he is needed and loved, and most importantly
   He’s my son.

It had taken a long time to persuade Harry to actually use the ‘frame’, as it came to be known. He had refused to even stand in it at first, it was placed amongst familiar toys, children of friends ‘played’ with it, still no interest, until one day I had taken something into the kitchen, when I suddenly heard his mammy word, I turned to go back and nearly knocked him over, there he was him in his frame, smiling up at me, from then on there was no turning back!

Apart from the plaster being knocked off the corners of walls and wood chipped off door frames, the dog being ran over several times as she tried to get a little snooze in, a lot of bruised ankles and toes, he could manage it fine.

There was the unfortunate episode in the store with the large glass display, but the assistant was most understanding.

So he was ‘free’ and did he take advantage of his new found freedom, did he ever. In the garden, shopping, on the wet sand of the beach, in the park, he tried everywhere. When he started nursery, so did the frame, sports day no problem, just give a little space. The smile on his face continued to shine; He soon became more of an experienced driver and accidents fewer. The frames grew with him; it came on holidays abroad with us, and earned several stickers.

Our little boy was born after an uneventful pregnancy on exactly the date we had been told, my waters broke in the early hours, and the contractions were bearable, just. By the time we got to hospital things were well under way.

I remember the two midwifes saying ok now push and chatting about things, as you do, giving me gas and air, and an overwhelming sense of excitement, we had waited for this baby for a long, long time, and had gone through so many things to get this far. David’s face was a picture, not known for his braveness at the sight of blood he was dealing with all this really well.

Suddenly a lot more people were in the room, David’s face was not so good, a woman looked in my face, “I’m sorry I don’t have time to numb you, we need to get your baby out”. The cut the pulling, the instructions to push, and again, more people in the room, David with his now grey face collapsing against the bed. People telling us our baby boy was not breathing, they were trying to get him to breath, don’t worry it will be alright. People rushing, doors opening, baby taken away. It was not alright, it would never be alright ever again.

1 in 400 children are diagnosed with Cerebral Palsy in the UK. There are plenty of websites that will give you all the medical information you need, some of the ones I feel are the better ones are listed on this site. There are very few that goes any way towards helping you through the emotional roller coaster of either with or being informed that your child has C.P.

When Harry was born we asked to see a counsellor, we had a lot of feelings and needed help to deal with them, the hospital gave us the number of a bereavement counsellor that wa rhe closest they could get!

Over the years, I most certainly have and believe David (my other half) has, felt very alone. We have both dealt with things in different ways. I know I have, and if I am honest still do have, feelings of guilt, maybe I could have done something to prevent this happening to my child and my family.

Sometimes I just want to talk to someone, who has gone through similar things, I want someone to tell me it’s ok to feel whatever I feel, I want someone to say I know I felt like that, I got through it like this, or this made it better or I found that…

So here it is CPTalk. It is as you can see very new, but I hope it will grow, I hope it will help. To start it off I have taken out of a drawer on old journal I kept when H was a baby, when I got sad, angry, frustrated or just mad, I would take it out and write, some of it are just ramblings, some of it are facts or information I had been given. Some pages are tear stained, one is even a huge scribble. I am going to I am going to use it to write a few articles for this site in the hope that it will prompt others to talk about their worries, fears and emotions. CPTalk is not going to fix things, but I hope it will help cope with things, help sort things, give some bits of advice and a lot of support.

I am not going to say “I know how you feel”, because I don’t I only know how I have felt and still feel, if I let you into our world maybe you will see you are not alone. So here goes…