My brother, and the big picture

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My brother, and the big picture

Postby worriedangel » Tue Feb 20, 2007 10:31 pm

I have a little story to share, and thank you in advance to all those who read it.

My brother, Mark, was born with severe cerebral palsy. He couldn't walk, talk, see, or engage in many activities we take for granted. He required 24 hour care, bravely given by my Mum, Carole. Given such a short life (an expectant 22 years), I cannot possibly explain just how bad times were sometimes. In hospital nearly once a month, my entire immediate family and I revolved around him. My Mum gaves a completly unconditional admiration and life of care to my Brother. As unbelieving as it may sound, although my Brother was severely ill he was always smiling. If ever without a smile, it was during the many times life was unkind to him.

My brother, Mark, passed away two weeks ago from pnemonia. He had very little 'quality' of life (or at least, compared to ours). An entire family gave up so much of what we take for granted to take care of him. He was 18 years old when he died, and I promise you, I could not have loved him more.

I've found it extremely difficult these past couple of weeks. This is the first time I've worded my thoughts externally. I just want people to remember this little story whenever they take their siblings for granted.

I love you Mark.

Take care everyone x
'We Who Are Truly Brave Will Never Live In Fear' - The Rock
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Postby peecee » Tue Feb 20, 2007 11:12 pm

Petal, your story made me cry.

A year ago, a close friend of mine died, leaving her elderly husband and brain-damaged, epileptic, crippled and helpless lump of a son (Robert) behind. They were both devoted to Robert, to the exclusion of everything else. It’s a long story, but I’m sure you know the details from your own life. PM me any time you want to rant about how weird life is!

People see your family, they think you’re angels for looking after a damaged boy like your brother, and wonder how you can do it (as if you had a choice). Or they think “oooer, I could never do that, keep away”. Or they think “I bet they hate their lives!”. They don’t see the mixture of love, the guilt you feel at blaming Mark for making you give up so much of your lives, the frustration at having your activities limited. And the joining forces against a world which doesn’t really want to get involved. You're not angels, you're human beings doing an incredible job, showing amazing strength, and you need to focus on that, not on the guilt you feel for sometimes resenting it.

We don’t know what’s happening inside our damaged loved ones, or what quality of life they really have; I know Robert laughs out loud at the most random things; he holds the newspaper right up to his face on the property pages, and only those pages. He stares at Eastenders and Only Fools & Horses. Yet there’s no chance he can understand any of these things. He has his own inner world, so did your brother; your brother most certainly knew that you loved him, and nobody knows for sure what else he knew. I would guess it was more than you think.

I know you have very confused feelings at the moment, but the guilt and the grief will go, and the love will remain. I promise you. And hopefully, you can all get on with your lives the way Mark would want you to, while never forgetting him.

Finally, I hope so much that you can somehow believe your brother is whizzing around without his damaged body, laughing at us all. I do, and it gives life meaning.

With love

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Postby kitten » Wed Feb 21, 2007 10:32 am

I am sorry for your loss.

My fathers first son had spinabifada and complications with it and only lived until 11 but the photos I've seen of him he was always smiling too. Hearing the stories from my Dad, when hes strong enough to tell them and this is 30 something years later always reminds me how much we take for granted.

I'm sure your brother is at peace now and your family sound like they gave him the best quality of life he could have asked for.
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Postby Pwif » Wed Feb 21, 2007 10:38 am

Well, I can't top Peecee's message to you, because I agree wholeheartedly with it.

You and your mum have played an absolute blinder by Mark, and as you say, he was nearly always smiling. Even if you didn't know what was going on in Mark's mind, I would think that he knew that he had unconditional love and warmth from you and your mum. Too often we take our families for granted and don't give them too much thought. I would say that even though Mark only had a short life, he couldn't have had it with a nicer, more loving family.

You and your mum now need to give each other as much support as you can. Lots of love. xx
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Postby netballluva » Wed Feb 21, 2007 10:15 pm

I can relate with some of the things that you have written. My youngest cousin has cerebral palsy, but nowhere near as severe as your brother.
It upsets me so much when I see his face drop when he can't join in with some of the things his friends do.

The best thing in life you can have is love and from what you have written i think everyone would agree that your brother had alot of love. There are so many families that would not have been able to care for him in the way you and your family did. You should be so proud.

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