Harrison is a beautiful little boy, where ever he goes people fall in love with him.  His physical disabilities are clearly noticeable when you meet him but he’ll always give you a smile and he may even say “Ello”, one of the few words he has learnt to say.

Harrison’s story begins at birth.  He was born 9 weeks early, although these days births this early are quite normal and babies do well and catch up very quickly.  Unfortunately in Harrison’s case it wasn’t to be.  Despite an easy delivery and being a good weight (3lb, 11), a routine head scan carried out at a few days old revealed some abnormalities.  At this stage we were told he would likely have motor related problems, probably on the left side of his body and probably lower limb.  This was devastating news, although it hadn’t even occurred to me that it could mean cerebral palsy.  All I could see was my beautiful tiny baby boy wired up in an incubator that drowned him, there just couldn’t be anything wrong – even the nursing staff were surprised and upset by the news.

There was worse news to come. Harrison needed an MRI scan to determine the full extent of his brain damage.  I naturally went with him to the scanning unit, I’ll never forget how tiny he appeared inside the MRI machine, totally oblivious to the whole drama surrounding him and what it may reveal.  I was praying the whole time it would be good news, that they had been totally wrong before.  I haven’t prayed since!  Nothing could have prepared me for the outcome.  His neo natal consultant concluded that Harrison was severely brain damaged and unlikely to ever walk.  The damage would affect his movement globally, meaning that his arms and legs would be affected on both sides of his body.  I could hear the words but couldn’t imagine what they would really mean.  I think there remained a part of me that thought maybe he would achieve the seemingly impossible.

I can’t explain how life unfolded over the following few weeks, my brain has blocked a lot of it out.  I guess I went on auto pilot.  I’d visit Harrison every day to feed him, hold him and bond with him, trying to shut of my pain.  I just wanted my little boy to be OK.  I needed him home so my family could be complete like we had planned it to be, a family of 4.

I was so excited when we were told we could take Harrison home.  He’d progressed well enough to be discharged two weeks prior to his due date, I was already proud of him.  My excitement was tinged with sadness however, since we knew that he (and us) would face considerable challenges which, of course, hadn’t been part of the plan! I had so many questions that no one could answer, it was all down to Harrison and how he would develop over the coming months and years.  I was so envious of all the other parents taking their perfect babies home, who hadn’t received the same news as us.  Why had it been our baby? What had I done wrong? What on earth had happened to our poor little boy?  I couldn’t comprehend that the discussions we had had about brain damage was in fact about our baby.  I didn’t make sense and it certainly wasn’t fair.

Coping with a new born baby is a tough job at the best of times.  Jon and I were not first time parents and had a pretty good idea of how the first few months would be.  We were wrong, it was far harder than either of us could ever imagine.  Harrison cried morning, noon and night and wasn’t a good feeder.  I breast fed his brother, Reece for 10 weeks and wanted to do the same for Harrison but as Harrison had spent the first 7 weeks of his life in hospital and I couldn’t be with him all of the time my milk supply couldn’t be maintained, so soon after he come home I had no choice but to swap to bottle feeding.  This is when our problems started.  He screamed so much I couldn’t decide if he was hungry or in pain, it was probably both.  We tried all the usual remedies for colic but nothing worked.  For months Jon and I survived on next to no sleep, getting nowhere near a routine.  Plus during all this time we had to come to terms with the fact that Harrison was going to have physically problems and we also visiting the hospital regularly for consultant and physiotherapy appointments, he also had a squint in his left eye, requiring glasses (which he has worn from ten months).  Furthermore Harrison’s elder brother was only just 2 years old and needed our care and attention equally.  We were tired, stressed, upset and beside ourselves with worry.  Looking back I don’t know how we got through the first two years.  You have no choice, you just have to.  Any parent has a natural instinct to keep going and to keep doing your best for your children, whatever life throws at you.

Cutting a very long story short, eventually Harrison was diagnosed with reflux and constipation.  Having been admitted to hospital on several occasions and tried on various medication something appeared to work and gradually bit by bit his discomfort following feeds subsided.  He was around 18 months old and only just tolerating solid foods.

In terms of physical development Harrison by now still could not sit unaided, could not roll or tolerate any time on his tummy as he could not lift his head up for very long.  He was still very baby- like.  He was a lot happier however, and could light up a room with his smile.  He was enjoying two afternoons a week at a local nursery and becoming much more sociable and he was at last co-operating in his physiotherapy sessions.  We were definitely seeing improvements but they were slow in coming.

Many thanks for reading

Jo xx

For an update on Harrison's progress, click here to read Jo's most recent blog