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(10 Posts)
chinchi Fri 11-Sep-09 09:37:22

I posted this message on the birth board of another site that I regularly post on, but after getting an excellent response, Id like to post it here too.

I dont often post much, so for those of you who don't know me, my son was born at 29+5, and was diagnosed with CP in July. I had alot of emotion building up inside me, and it was nice to finally let some of it out.

Ive had quite abit of time today to mull over things, and I think I can safely admit that I have been a little backwards in coming forwards with my feelings. Its all boiling down to Kerem. He is now 2 years old, a thriving toddler, my whole world, my life. In two years, he still hasn't called me Mummy. Don't get me wrong, he knows who I am, who we all are. He has it 'all up top', and everyday it is getting harder for me to come to terms with all he has been through, and all that is yet to happen.

I often wonder what it's like to have a child who runs around, shouts after Mummy, walks to bed dragging their blankie behind them. A child who runs to you when theyre hurt, dances in front of the TV and who asks to do this or that.

I often wonder what people think about those with a child with difficulties, and if they ever stop to consider all the little things that they take for granted with their own children who are capable.

When I was younger, I had a dream that one day I would be the proud owner of something so immaculate and exquisite. Everyone would want what I had, and if they were capable, they too could have one of their own. I spent years wondering what it would look like, what I would name it, and how I could look after it.

Years passed, and eventually the time was right. I met someone who wanted the same as me. We thought long and hard, saved up enough money, and told our family and friends about what we had decided. We knew we would have to wait 9 months for its arrival, but that time was filled with hope, anticipation and dreams.

Without warning, our delivery arrived early, a whole 2 months. We weren't prepared, but knew there was no turning back, so we had to think hard and fast. We would overcome this small glitch, it would be something and nothing. It was perfect, small than expected, but amazing in everyway, or at least to us.

Our parcel had been damaged in transit. There was no mention of this in the instruction book, nobody told us to expect anything like this, but we were told that we would have help in looking after it. The most intriquit part of the parcel was damaged, only ever so slightly, it wasn't even visible, but that had changed everything.

Our parcel would be different to everyone elses. It would need more care and attention, and the future was uncertain. Things were fine for now. When people asked if they could hold it, they gazed with delight at such a small miracle. Nobody other than us knew of the problems, but we wondered how long that would last.

As time progressed, there was hope that all would be ok. That we were told wrong, and in fact nothing bad had happened to the parcel at all, but that was just a dream. People still wanted to help us look after it, but they too were unsure what the future would hold.

Looking at other parcels, we knew something wasn't right. We wondered what we had done wrong, and felt guilt, wondering if it was all our fault. Our feelings were all over the place, but we wouldnt change things for the world, and instead were filled with an immense need to nuture and protect our parcel.

My parcel is now 2 years old and more beautiful than ever. He looks like any other parcel, but now people know that things aren't as they should be. He doesn't know any different, but now our fears grow for the future. Things won't get any worse, but we wonder if they will ever be right.

He glistens when the sun shines on him, and looks beautiful when the world is asleep at night, and I go to take a sneaky peek to make sure all is ok.

Some of us are chosen to care for special parcels. It doesnt mean we do a better job than anybody else, in fact things are harder. The physical strain is nothing, but the emotional impact of wondering if youre doing eveything right takes its toll.

The next time you see someone who has a special parcel, take time to say hello, or to smile. Tell them how beautiful it is. Don't make them feel bad because they have something that is different. Tell them not to worry, because everything will be ok.

I'd like to start recording the progress my son has made over the past 2 years, maybe starting a blog, or even consider a book charting his journey and what we have been through as a family. Does anybody know how I could get started up? Would it be something people are interested in? Any opinions very much welcome

Jo5677 Fri 11-Sep-09 10:00:46

Hi Chinchi, I have an 11 year old daughter with severe CP and also a son aged 7 on the autistic spectrum (i have 5 children altogether).
I could identify with a lot of what you wrote.
I have been keeping a family blog for a while now on wordpress,if you'd like to take a look sometime i'd be happy to send you address of it.
Anyway i think writting a book charting your son's journey is a great idea. I've often thought of doing the same.
I too though don't have much idea of how to get started.
Good look with getting started on yours, Jo.

twoisplenty Fri 11-Sep-09 13:13:22

chinci, that is beautifully written and so heartfelt. Did you write it yourself, because if so, you have a gift. Beautiful.

I can identify with what you write, because my ds is 10 now, and has cp and learning difficulties and epilepsy.

"I often wonder what people think about those with a child with difficulties, and if they ever stop to consider all the little things that they take for granted with their own children who are capable." I can only speak for myself, in that my younger dd, is nt, and I treasure every minute. I also treasure special moments with my ds because each time he achieves something new it is so exciting and rewarding, whereas for a nt child, the progress is so fast, I miss some of it!

I still grieve for the child I should have had (ie a nt child instead of my dc with his cp). I can look at him and "see" what he would have been like. I don't like to look too often, it's too upsetting.

"The next time you see someone who has a special parcel, take time to say hello, or to smile. Tell them how beautiful it is. Don't make them feel bad because they have something that is different. Tell them not to worry, because everything will be ok." I may be wrong here, but doesn't that just make the bystander feel better? It doesn't make me feel better! Because no-one knows whether it will be ok, do they? No-one knew my ds would develop epilepsy at 4yrs, that now no doctor can fathom out, and currently the three medicines he is on do nothing. His life expectancy is shorter. What will he feel in his teen years? I bet he won't feel "ok", I bet he will be full of anger.

Wrt to your blog idea - yes, do it! I wish I had. I only wrote a few notes, but they are invaluable. Go for it!

chinchi Fri 11-Sep-09 19:10:11

Thankyou so much for your replies.

I did write it the piece myself- for some reason lastnight when I was putting DS to bed, I lay next to him and the emotion built up over the past two years just came and hit me like nothing else had before. I had fears, hopes, grief and so much more whirling through my head that I just had to put it into persceptive somehow.

You could be right twoisplenty about the bystander feeling ok. I completely see where youre coming from, and hadnt really thought of it that way so thankyou.

Since my reflection lastnight, I feel I have so much more that I want to put on 'paper'. Not just for my own benefit, but so that others can think 'Im not alone', which is something I so often do.

proudestmummyever Fri 11-Sep-09 19:35:04

Hi Chinchi, I think what you wrote was simply beautiful, I couldn't have wrote it better myself

U had me in tears, because I relate to everything you said, my son Jack is also 2 , well just turned 2 and a half and has a genetic disorder, including severe epilepsy, severely delayed, can't walk, talk or play with things etc, but looks absolutely perfect, no telltale sign by looking at our little man tht anything is wrong, but we know only too well all is far from well

I think you should def write a book
Pls stay in touch, have so much in common, have a peek at my pics if you like

Take care, and cuddles and kisses to yr special little parcel xxxx

chinchi Fri 11-Sep-09 19:41:27

Thankyou proudestmummyever. I have made quite a few people cry these past two days with my outburst!

I have started a blog just now, so at least I can get some of my thoughts out. It doesn't have much of a flow at the moment, but I wanted to start whilst I have the house to myself. Too many distractions any other time!

Cuddles and kisses to your parcel too, because some parcels are worth all the cuddles and kisses in the world

proudestmummyever Fri 11-Sep-09 20:07:12

Hi Chinchi

You are doing a great thing writing it all down, I feel some days tht I could write and write and write about Jack and not stop, other days are just so frustrating and hard.

But our babies are truly gifts. Having Jack has opened my eyes and made me a better and stronger person, I have a daughter who is 8 and nw I realise the things u take for granted when u have a healthy child, not til u have a child who is less able tht u realise all these things

And yes I agree tht some parcels are most def worth all the cuddles and kisses in the world

:0 xx

anonandlikeit Fri 11-Sep-09 20:23:38

Hi Chinchi, your post is lovely. It is a very theraputic thing to do, if you feel so much emotion & are able to put it all down on paper it can only be a positive thing.

Much of your post is similar to our story, our ds2 born at 28 wks. I too often wonder what other people think, do they not comment becuase they see ds2 & not his disabilities or are they being kind.

I have not gort your talent for writting, I just have endless ramblings grin.
If you decide to get a blog up & running.. or a book.. please let me know I'd love to read more.

TheDMshouldbeRivened Sat 12-Sep-09 07:41:15

'I'd like to start recording the progress my son has made over the past 2 years, maybe starting a blog, or even consider a book charting his journey and what we have been through as a family. Does anybody know how I could get started up? Would it be something people are interested in? Any opinions very much welcome '

I started a blog about dd - severe cerebral palsy and epielpsy - mainly to get my feelings out for the grieving process. Its now being turned into a book.
Now she is 5 and the acceptance has come for how different she is (mostly. Some days the fact she cant walk or talk or play is a bit overwheliming) I've stopped writing it.
Mind you, when my other kids were this age they'd get up and spread rice crispies everywhere and turn on the TV and I could get a lie in. dd wakes at crack of dawn and starts 'ah aha ah ah ah' which means 'come on, lets be up and doing' and we have to get up. I do miss lie ins.

chinchi Sat 12-Sep-09 12:14:15

I started a blog lastnight, but just felt like I was rambling, so I left it. I have so much to write, yet not enough patience (and time as it feels sometimes!)

The past two years have been a whirlwind, from DS arriving at 29 weeks, to my Mum passing away 3 months after, the shock of realising something was wrong with DS, and up until now, the time when every emotion I have felt over the past 24 months has just come and smacked me in the face.

There are times when I feel Im the only one in the world going through this, but I know thats not true. I too have to learn to accept.

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