People have advised me that writing is a good outlet for grief. Since I began this blog as a form of therapy to help me through Harry’s recovery, I suppose it is appropriate to add to it as a way to help me say goodbye to him.
If becoming a parent is like joining a club, becoming a parent to a child with Down’s Syndrome is like joining a truly exclusive club. It breaks our hearts that Ian and I are no longer a part of this world. Because Harry died so suddenly, we were unable to donate his organs to help any other children or families in need, so perhaps sharing some of our experiences and lessons learned is the only way we feel anything can be gained from our horrible loss. My heart is still too heavy with anger and grief to write regularly, but I do want to share my personal, happy memories of Harry, and I hope that maybe some parents who read this will take some strength and feel less afraid for the future, enjoying the present day with their precious children instead.
I can only do this by addressing this final post to Harry. So, my beautiful boy, this one is for you.
To my darling boy.
Nearly 12 weeks have passed since you left us, and my mind is still consumed with memories of you every second. People keep asking me if I’m ok… I can be brave with your Daddy’s support, for the sake of your little sister, but the truth is sweetheart, I’ll never be ok. Every part of my body is aching to have you back. My amazing, precious son.
Do you remember the fun times we had before September? I think of them all the time. I remember feeding you in your high chair but not being able to get the spoon in your mouth because you were more interested in eating your feet. I remember when you first discovered your feet and you would lie on your back lifting them high into the air. I was so proud you could do that so young. No extra chromosome was stopping you my gorgeous, strong boy.
I remember how much you used to love to shout. You also loved to chew on your hands and would often try to do both at the same time. I miss the noises you used to make.
The day you first fully rolled over was one of the proudest moments of my life. You were hilarious the way you would only ever roll in one direction. I would move you to one end of the playmat and you would roll all the way across it till you rolled into the sofa. I kept having to buy bigger mats.
You never quite mastered the sitting fully unsupported, you were too active to sit still. I’d hold your hands to pull you into sitting and you pushed your legs up to stand instead. Your big blue eyes beaming with excitement at this achievement, your beautiful smile just melting my heart.
You’d just started reaching your arms out to me to pick you up. That was such an amazing feeling. Then when I held you, you would grab my face in your hands and pull me towards you. I was your mummy and you wanted my full attention. My god you had it sweetheart. Every single bit of me.
You never really cried… not even first thing in the morning when you would wake up hungry. You didn’t cry, you just called me in your own special way. I would roll out of bed rubbing my eyes exhausted, and there you would be, lying in your cot kicking your legs and waving your arms with your beaming smile stretching from ear to ear. What a way to wake up every day, I never had a moment of sadness with that smile in my life.
And your laugh! I remember so clearly your first little giggle, and how quickly it developed into such beautiful laughter. You were just delighted to be here, despite all the hurdles you had to face.
From the second you were born I started to wonder about your future. I wondered how having Down’s Syndrome would affect you. I wondered how it would affect your dad and I too. I worried about the most ridiculous things, like how your speech would be affected, would you be able to go to mainstream school? I wondered when you would crawl, and when you would walk. Throughout your short life, I feel like I concentrated far too much on the stuff you didn’t do, rather than what you did.
I wish I had been able to tell you how proud you made me.
A huge piece of me died with you that Saturday darling, but I will carry you in my heart forever. It will never beat without you. Our family
will continue on, our grief for you will never subside, but happiness is something we need to survive, and your beautiful sister will help us with that. Her, and our wonderful memories of you, my boy. My beautiful, strong, happy boy…
I hope you are smiling now that you are finally free.
All my love for eternity Sweetpea.
- It’s been just a couple of weeks since my first post, feels so much longer! Harry’s recovery seems so painfully slow on a day-to-day basis, but when I take the time to reflect I realise just how much has happened. We’ve had several appointments with the neuro physio now and despite the odd meltdown Harry seems to quite like her. She is very pleased with the strength in his legs and she’s told me that’s a very positive sign in terms of future mobility. His arms and his trunk are our main challenge with him though, his arms are constantly bent at his sides and his trunk seems to be most comfortable forming a banana shape! It can be quite a stressful, frustrating thing to manage… just putting him in his car seat is difficult as it’s important to make sure he is as straight as possible and to try to bring his arms forward, but he gets really quite cross when we mess with him. Stubborn he is, gets it from his Daddy!
- The big event that has taken place since my last blog however, is the fitting of his PEG tube. He’s had a naso-gastric tube in place since that fateful day mid September when he became so poorly, and I remember the feeling as my heart sank heavily, watching the nurse pass it. He’d had one before his heart surgery at 3 months old, and after his heart was fixed we were delighted to be able to take the tube out almost immediately as he took to oral feeding again no problem. I remember as I watched this nurse passing that damn tube up his nose again thinking, please, please, please let this just be for today, please don’t let this be a long-term thing… 4 months on and of course, it was still there. Naturally, in an ideal world, the ng tube would’ve been coming out as our boy had learned to oral feed again, but after seeing the results of his MRI scan, his dad and I have accepted that we are in this for the long haul. Miracle boy though he is, he’s going to need a little longer to re-master such skills as feeding, and in terms of priorities, well, it’s a little way down the list.
So, last Thursday, 24th January, the PEG was fitted. It was the first time Harry has had to go under anaesthetic again since September, and it was a strange feeling going into the theatre with him, yet again, and giving him a little reassuring kiss as they held the mask over his face to put him to sleep. Such mixed emotions hit me with the memories… the heart surgery, which was so wonderfully successful, then the bowel surgery, when kissing him goodnight didn’t seem as scary, as I honestly believed it would be a much more straight-forward procedure, then the next day, having to kiss him goodnight outside the theatre this time as the situation was too critical for his daddy and I to go in there with him. Harry cried as they held the mask to his face, hating the smell and no doubt the taste of the gas… and the tears fell down my cheeks freely this time, despite it being such a routine procedure… the nurse must have thought I was a bit crackers!
Everything went smoothly though, and just a couple of hours later he was returned to us safe and well, a little sore of course, but his beautiful, plump cheeks finally free of tape and tubes.
Since then we haven’t been able to do much with him physio-wise, as he is still in a bit of pain. Understandably I guess, given he has had a hole put in his tummy! So the boy gets a break from the graft this week, but back to boot camp next week when his pushy mummy will be pestering him again!!
One of the things I am finding most hard is the way my mind keeps comparing him to the boy he was before. But I have realised this week that I have to try to stop that now. It is like a grieving process, but we have to accept that we are where we are. Harry has done so incredibly well to survive what he has and progress to where he is now, and it simply isn’t fair on him for us to compare before and after. I have so much faith in our little soldier, his head is getting stronger, his legs never stop kicking, he’s taking tiny little tastes of milk from a flexi-cup and he generally seems more alert. On good days I am full of optimism for his future, and unspeakably grateful that we are lucky enough he was strong enough to pull through and give us this hope.
We are also blessed with incredible support from our friends and family. My wonderful friend Mandy has started a ‘Help for Harry’ campaign this month, where she is training to run the Wilmslow half marathon in March to raise funds towards his therapies: www.helpforharry.moonfruit.com. My husband and I were stunned speechless when she told us what she was doing, and then again, a week later when she gave us a total update of over £2500.00! How can Harry not flourish in an environment like this, with such amazing love and support all around him?
So we put the past behind us, and march on, with gratitude, love and hope.
Tired, but tube free!
Heading home next day.
Not quite getting the point of the stimulation box!
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.