Thursday, 9 May 2013

About a (blind) boy

Update: I wrote this post last year as a guest post for Rachel at Imagine Gnats but I realised looking through my blog that its not easy to find information about our journey with our son Lucas, so thought I would reshare it tonight, as he is filling my mind with concerns and complications for the future. We are dealing with new issues, and I will attempt to blog about them in the coming weeks, so wanted to remind my older followers, and inform my newer followers before I get stuck in!
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So, I am really excited to write a guest post for Rachael at Imagine Gnats, and have spent a long time wondering what to write. Do I write about being English (I think most of the other guest bloggers aren't), do I write about something crafty that I am up to? Or maybe even a tutorial?, but it is the Easter holidays here, and the thing which is most on my mind is my son Lucas - so here goes:

About a (blind) boy: 

Lucas was our first child, born in June 2002. He is the most incredible, funny, talented, magnetic boy in the world. He also carries a huge list of diagnoses, which don't describe him, but they are a huge part of who he is - here goes:
Septo Optic Dysplasia
Optic Nerve Hypoplasia
Partial Agenisis of the Corpus Collosum
Agenisis of the Septum Pellucidum
Migratory Brain Cysts
Retinal Aplasia
Tetralogy of Fallots
Low Gut Motility
Sensory Processing Dysfunction
Gonadotropen dependent precocious puberty

He is blind (he reads and writes Braille and uses a long cane and echo location to move around), he has life-threatening and life limiting medical conditions, which require medications from 7am til 11.30pm everyday. He has intramuscular injections, sub-cutaneous injections and can never be left in the care of someone who isn't medically trained.

Having a child with severe disabilities is an incredible journey - it challenges your ideals, your parenting, your belief system, definitely your marriage and family relationships and your ability to cope. I don't always cope - I have intermittent depression and anxiety, I don't sleep well, I eat either too much or not enough, and I am going grey!  My husband and I have survived - although we have times when we become insular, when we don't communicate and when we just don't like each other very much!  I question my parenting almost on an hourly basis and am known by professionals and other parents as a control freak.  If it weren't for the support of other parents, then we would not have had the confidence and understanding that professionals aren't always right - and our son would not have survived if we had not found the amazing team at Great Ormond Street Hospital.  I am truly thankful for the National Health Service in this country every single day. without it I'm sure either Lucas would be no longer be with us, or we would be bankrupt.

We are so busy trying to get help, support, advice, provision and medical intervention for our children, that often it is hard to have our own personal voice - but being Mum to Lucas is an enormous part of who I am. I have learned a lot medically, I can read and write Braille, I am now a Mobility Instructor and we run a charity loaning out long white canes to Visually Impaired children across the UK (and are the only people to do this).

People ask how I cope - and the answer from me isnt that different to the answer my friends with disabled children give - because I have to, and mostly I really enjoy it.  For me, firstly study (I earned a BSc from the Open University) and then crafting are essential for my well-being.  I craft, I think, because it is something that I do just for me, something that isn't connected to being Lucas' Mum.  I am not the most skilled crafter in the world, nor the most unusual or original, but it is my thing - and crucial.

Here is a poem which is known to most parents of children with disabilities, but not so much by other people.  I think it is brilliant!


by Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

And here are some through the years shots of my truly remarkable, one-in-a-million boy:

Love Sarah xxx

1 comment:

  1. What a beautifully written post, Lucas looks a happy cheeky chappie in your photos and that poem I would think definitely sums up what it must be like being the parent of a child with disabilities. You are definitely an inspiration to me. X


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Love Sarah