It’s amazing to think that 2004 was 10 years ago.
In that year, Tony Blair was Prime minister, the Olympics were held in Athens and the actor Christopher Reeve died. It was also the year that I set off with my husband for a slightly delayed ‘gap year’. First travelling to Uganda, to work as a doctor and nurse (sticking with the stereotypes) in a small clinic in the capital Kampala.
We then next worked in Gisborne General for a couple of months, before travelling around New Zealand. As we loaded our backpacks for the journey home we heard news of the devastating Indian Ocean earthquake that rocked Indonesia and the world. The ensuing Tsunami was of incomprehensible magnitude, killing over a quarter of a million people.
On the final leg of our trip we experienced some of the sights, smells and tastes of Australia and Thailand. When we alighted the plane in London, we were greeted by UK officials checking that no one on board had been in Thailand on Boxing Day. It was a stark reminder that while we were exploring and enjoying life, for many the world had changed immeasurably and forever.
Within a year our own lives experienced a tectonic shift. On 12th October 2005 our son was born limp and not breathing, leaving him with severe brain damage (Cerebral Palsy).
My heart broke, my emotions raged, my God seemed silent and my world began shrinking.
Eight years later I continue to feel as though I live in the aftermath of that day, with his growing body showing the life long consequences of being starved of oxygen.
My life is unrecognisable from the dreams I once had, with the challenges of each day greater than I ever imagined.
At times I feel I am held in the shadow lands of another world unknown to many; with my precious, beautiful, little boy and the relentless, persistent burden of loving and caring for him.
I am on a journey and road most people are sheltered from and oblivious to. It is as though I now travel through life carrying a permanent backpack.
Some people don’t notice my burden, while others look the other way by saying,
He’s such a happy boy; isn’t he lovely?
Then there are friends who think they know exactly what my rucksack contains and what it is like to carry it.
But they are mistaken.
This backpack is unique to me and mothers like me.
The weight of this backpack I carry changes.
When I go to the park it is loaded down with the disappointment of not getting to enjoy the slide; when at the beach it’s sadness at missing out on the ice cream.
When holding my son I’m weighed down with the grief of knowing he cannot see my face or hold me in return.
My backpack contains the pain of my own missed dreams and never hearing my son say ‘Mum’. During days with nieces and nephews it digs into my shoulders and throbs with the ache of fantasies about what could have been.
On days out I’m crippled by places that are inaccessible and facilities that are inadequate. Every day my rucksack is plagued with sleep deprivation, the heavy labour of lifting and doing everything and anything my son requires.
With time and training I carry my backpack a little more easily. I regularly examine its contents and make sure there isn’t anything in there I can’t remove. Yet there are days it is heavy and cumbersome, making life feel broken and shackled.
But I have hope; hope from the beauty of a mosaic, created out of shattered tiles.
I hope that as I piece together the shattered elements of my life and dreams they can be fashioned into something more elegant and beautiful than their broken parts.
This bought tears to my eyes, thankyou for sharing! Heartbreaking but beautiful insight to the life of caring for a child with additional needs. Keep going xxxx
With a grand daughter who has CP we understand just what its like and our daughter and son-in-law along with the 2 siblings deal with the daily things in a fantastic way. Its non-stop requiring total commitment and love of course. Harriet is a beautiful soul who clearly is aware and happy but its heartbreaking at times to see and the situation often brings tears to our eyes but the dedication and love shown by her Mum,Dad and brother and sister is inspiring. Never under estimate the power of love.
Thank you for guiding and making it more understandable to us. Love and prayers.
I find this quite obnoxious. I am the parent of a young person who was starved of oxgen at birth and has severe cerebral palsy. I have NEVER called her a burden. Yes, it can be bloody hard work at times but, if you really find it so hard, why not put him up for adoption. There are disabled people around happy to adopt disabled children and give them a positive feeling about their impairments. On balance, bringing up my daughter has been a joy. (Though she can be a pain in the arse at times.) Ugh, the emotions behind words like “weighed down with the grief” will be picked up by your son, whatever his cognitive level. My daugher was deeply upset by your words, as would be any other disabled child who sees it.
I am sorry for causing offence. I’m not justifying my reaction but expressing the difficulties I have; the good, the bad and the ugly. The grief I feel is not towards my son I would not have my life differently but that doesn’t mean it isn’t incredibly hard. Easy isn’t necessarily best. I wish you and your daughter all the best. Feel free not to read any of my future blogs.
Thank you for this – honestly beautiful. Love to the family x
I am the daughter of the commenter, I do understand where you are coming from but if your son reads that and it makes him think he is a burden. how would it make him feel?
” On days out I’m crippled by places that are inaccessible and facilities that are inadequate. Every day my rucksack is plagued with sleep deprivation, the heavy labour of lifting and doing everything and anything my son requires.”
absolutely love this (how you have written it and I feel the same). is the burden your son or society? I would like to talk to you if you want
Feel free to email me at firstname.lastname@example.org. Thank you for your comment.
A beautiful heartfelt and honest piece of writing.
love to you, T & your family.
I find it hard to understand how calling a difficult situation a burden is any different from saying it is bloody hard work or that the individual is a pain in the arse at times. It is quite obnoxious to suggest, just by reading a few paragraphs, that a child be put up for adoption.
Rachel please do not allow this anonymous individual’s opinion alter or influence your future blogs as you have, and will continue to, positively touch so many hearts.
You’re an inspiration to me, daily. The way you live your life as an adoring and devoted mother and wife and a caring friend to so many.
Your words of honesty are refreshing in a online vacuum of fakery and nastiness.
Your words speak of pain and struggle, but moreover your words speak of love and devotion to your son. Your actions however show of how you are a true servant
Big respect and lots of love x
if she is a loving mother, why she didn’t thought how upsetting this could be to her son, he isn’t what she wants!!
I’m not going to engage in an online argument with someone who hasn’t met either Rachel or her son. If you had, you wouldn’t question her love or whether its what she wants.
As for her son being able to read this blog I think Rachel would be overjoyed if he could- as that would mean he could see words, but moreover he would be able to see her face.
sorry sorry I don’t want to hurt anyone I am sure Rachel loves her son
Rachel loves her son more then you can understand this is why it breaks her heart that he cannot do the things that children his age normally do, I’m sure you understand how hard it is and she is the bravest and most caring person I have ever met, her son is a happy boy because of all the love that surrounds him,
Rachel your an amazing mother to that beautiful boy dont let anyone say different it is hard work and anyone would feel how you do if they were in the same boat! His such a loving child and his perfect in our eyes! God bless xx
If there’s one thing I can’t stand, it’s obnoxious anonymous bloggers. Rachel you are a fantastic, loving mum to an amazing child with exceptional needs. Keep blogging xx
You are amazingly brave, both everyday and by writing this so publicly. I think if anyone wants to follow your journey as you reveal more through this carefully written blog, they will come to know, respect and admire you and your wonderful family.
God bless, and big hugs to all xxxxxxxxx
I have read both blog entries posted and was moved by how honestly you write. Look forward to reading more from you. From what I know this little boy and your family are surrounded by love
Thank you for sharing your blog Rachel gives great insight. For those that have negative comments its Rachel’s blog to express how she feels. Rachel shows great love too both her sons. Rachel would do anything for both her sons. Xxx
Profound and honest to the core, may God Bless you and your family and may he always hold you very close.
This is so well written on so many levels. Without doubt this us how God is choosing to use you x
[…] of my first blogs focused on carrying emotions. Holding them too tight, saps me of all my energy; leaving me with nothing left. Ignore the weight […]