Wednesday, 20 August 2008

Summer tour of wet UK (and first chest infection scare...)

At the beginning of August we met Rich and his family when they came to stay around Paris. It was great to see them and we're all looking forward to actually doing the trip we planned together for this year at some stage next summer.
Ross then spent the past 2 weeks with us staying with our families in Scotland and Northern Ireland. It did stop raining a few times...

During this time our families got to spend some quality time with Ross, but going hand in hand with being in contact with lots of people goes the increased risk of infection due to Ross's immune system being reduced due to the steroid treatment. As a result we did spend some time with doctors and in hospital, but that was a 'blip' on an otherwise enjoyable trip, including one sunny day on Portsteward Strand beach!
My fitness training has been a bit erratic but having seen the total amount on increase to over £13,000 including Gift Aid I'm determined that Rich and I will climb Mont Blanc during summer 2009.

The total has been increased dramatically thanks to £1100 raised by my Auntie Kathleen from her 60th birthday donations and £325 raised by my future sister in law Leanne and her friend Julie from their own half-marathon efforts. A huge thank you to them!!!

Wednesday, 6 August 2008

Welcome to Holland

Ross will be 3 months old this week, 3 months in which so much has happened, and yet in Ross's little world so little is happening. The combination of anti-epileptic drugs and steroids seem to still be keeping his convulsions under control which is great, but at the same time it's becoming more obvious that he is not developing mentally.

We went for another EEG scan of his brain activity last week and as soon as we saw the patterns on the screen we knew his brain activity was not improving. The doctors confirmed this and acually suprised us somewhat by talking more about how to ensure Ross's limbs don't cease up etc as they now don't expect him to develop mentally. This is obviously not what we were wanting to hear, but it's amazing to think that we've got to the stage now that we can hear such terrible news and remain calm...

Our friends and family are being incredibly supportive, but at the same time are struggling to understand how we feel. We find that these words written in 1987 by Emily Perl Kingsley based on her own experiences sum it all up very well.


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.