Harry – Our Journey

 

Today I decided it would be good for me to start a blog.  Note the ‘for me’… I’d like to say I was doing it for a greater good, to raise awareness, or to help others, but no, I’m doing this as a form of therapy for myself.  An outlet I suppose.

When I decided to start it my first thought was, where the hell do I start?  How to I explain how we came to be where we are today?  Then I realised I couldn’t.  The best place to start is from today, the here and now.  Those who don’t know our background with Harry could perhaps refer to my husband’s blog ‘Ups and Downs’ at www.harrysgame.wordpress.com, and my own one off blog at www.livvi1205.blogspot.co.uk.

 

As a result of what happened to Harry after his bowel surgery his Daddy and I are now facing the stark reality of having a one year old boy with an acquired brain injury.  The single toughest, scariest thing I can ever imagine having to endure.  Don’t get me wrong, I am grateful everyday for the fact our little soldier survived his horrendous ordeal.  He’s here, and we have hope, for which I know we are truly blessed.  But he is no longer the happy, active little boy he was.  And at this stage, we don’t know if he will ever be the same again.  He now has epilepsy as a result of the injury, the seizures are mostly controlled but we still see signs of them from time to time and live in fear of their return.  He also has ‘Cerebral Visual Impairment.’  This means that his eyes are healthy and can see, but his brain can’t process all of what he sees.  We have to feed him through a naso gastric tube, as he has forgotten how to feed orally, and he has very little mobility left, he’s barely able to hold his head up at the moment. But worst of all, he doesn’t smile anymore. I keep thinking it’s coming back but then it disappears again.  I dream every night of that little smile of his.

When Harry was diagnosed with Down’s Syndrome I could barely move for offers of support, comfort and hope from various organisations and other parents.  But this is different.  Every child who survives a brain injury is completely unique in their recovery, I’ve read wonderful positive stories of recovery, but the injury is always different, the child is normally older, or sustained the injury at birth, and really, there is just no comparison or comfort to be found.  Everybody keeps telling us we just have to wait and see what Harry’s future will bring. 

Waiting isn’t exactly one of my strong points though.  Never has been.  So I have immersed myself in information about the human brain, and how it recovers from an injury.  From what I can gather, age is definitely on Harry’s side, there is a degree of neuroplasticity which allows the neurons in his brain to create new pathways and reconnect.  The damage can never be undone, but the brain can be taught to compensate for the affected areas.  So that is what I am clinging to.  I have started taking him to a private neuro physio twice a week, as the neurologist has warned us Harry may never be mobile… I can’t sit by and face that as a reality for our boy, so intensive physio seemed like the best place to start.  We also have a community physiotherapist who is funded by the NHS but she can only come once a week and that just wasn’t going to be enough to meet Harry’s needs.  We also have a community speech and language therapist, but her time is even more in demand so I will be looking for ways to improve on that therapy too.  I have come across an organisation called Brainwave, who following a two day assessment, provide exercises and techniques to be followed at home, building on the theory of neuroplasticity.  I have a lot of hope that this will be something we, as a family, really get a lot from, and more importantly, that they will help Harry start to become the little boy we once knew.

So here we are, about to embark on a journey of completely unknown territory.  It breaks my heart that we have to take this road, and we ache for the life we had before September 2012, and our healthy bouncing 8 month old boy. But this is what life has presented us with, so together, as a team, our family will deal with it, and whatever twists and turns it may bring.  And this blog is where I will try to document the journey.  I should probably also mention that I am 33 weeks pregnant, expecting a little sister for Harry in early March! I will of course share my experiences during that time, caring for our brand new bundle of joy alongside helping Harry through his recovery… time allowing that is!!

Although, as I said at the beginning, I have started this blog mainly for selfish reasons, please do follow and share it, as I hope and pray that I will be able to share a lot of positivity as Harry does achieve certain milestones, and who knows, maybe someone else out there somewhere is experiencing something similar and could take some hope from this blog one day, or even just get in touch and give me some hope.  Thank you.