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