A Time for Building Memories

For the last ten months we have been struggling to come to terms with a change of direction in our lives. The suggestion of something other than Cerebral palsy causing the changes and difficulties for our youngest child had come as a shock to say the least. Over the last ten months we have rollercoastered through the stages of grief back and forth. But it is time to stop grieving! Eve is stil here with us and we have to look to making the most of the moments we have with her. We need to live her life not mourn her diagnosis.

So half term, Sunshine, A willing carer and we make some plans for fun! Back in April we had visited Alton Towers with Joshua and Christina and bought their annual passes that give us access to several different theme parks and the like. We decided to go and take a look at Chessington and Legoland. It was too far to do in a day...we would need a bed for the night so we start trawling the net for cheap B and B. In the midst of this tral I got into converesation with a friend who was also planning a trip to Chessington, this friend has a friend who lives near there and will ask about local B and B. Cutting a long story a little shorter half an hour later I am on the phone to this friends friend discussing staying at her house....8 of us mind you and she wants to put us up! Having told her all the possible pitfalls of a houseful of Hilliers we realise that this is going to happen! What a wonderful person to actually want to do this for us! We were so grateful.

Over the next couple of days we made sure Eve got plenty of rest and quiet times, we made sure we had shopped for picnics and resolved all the medical issues to ensure we were fully equipped for a night away. All of this without Joshua or Christina guessing what we were plannning. Wednseday Evening we learnt that a friend of the friend of our friend had decided that their house was bigger and they were away anyway so we could have their house! Not only that but the Housegroup had put together to arrange to cook a meal for us and a box of brownies. We were totally flabbergasted at the love shown to us by a group of Christians we had never met. This was Christian love at it's best.

So we set out for London on Thursday morning. We made good time and had it not been for horrendous traffic 7 miles from Chessington we would have done the journey in little over two hours. Sadly the last few miles spoilt that but we made it in the end!

Meeting up with our friend TJ worked reasonably well however we had also secretly planned to meet with Bethan...Sarah had travelled with us from home and had no idea her big sister was meeting with us....it was a fantastic reunion when we found each other. My only regret is not having a video camera running the moment Rosie set eyes on Bethan, it was priceless!

The Sun shone, the kids had fun and Eve and I lazed in the shade as much as possible.

Christina and a child TJ brought with her made friends instantly and had a great time getting to know each other, although anyone looking in on our day would think they had known each other for years!

All too soon it seemed we were heading off to meet the friend of TJ who had first offered to put us up. Then on to the other house where we discovered a meal cooking in the oven and beds made up and a garden of fun for the children. The meal was wonderful! The Brownies melted in our mouths and the sun shone on!

Unfortunatelt despite the busy day Rosie was not for sleeping. Medicated and fed and watered and changed to PJs yet still she giggled and refused to sleep. Meanwhile Eve was unhappy and tired and just not feeling right. She moaned and whimpered the night away. David too was uncomfortable and tossing and turning all night. Rosie was happily throwing books on Sarah's head to ensure she did not sleep. Joshua and Christin and Jonathan snored gently, I patted Eve's back and reassured her, David crept down to lay on the Sofa, Sarah tried desperately to ignore Rosie and snatch some sleep....then it was morning!

Once everyone was breakfasted and the bus repacked, the friend returned to clear away the extra bedding etc and we set off for Lego land! OK so we had had little or no sleep but the sun was still shining, Eve was now smiling Rosie was still giggling and there was fun to be had!

The sun was shining very warmly even by 10 am...once in Legoland we headed for a shop selling sun hats and sun cream! Then for the cafe for a drink....ahhhh at this point Rosie built up twitches and niggles into full blown partial seizures, agitated and out of control we reached for some rescue medication and after a tousel managed to adminster some through her Gastrostomy with a bolus of water and hoped it would kick in quickly. We headed to guest services for the exit passes the disabled members of our group were entitled to. There are few perks to having a disabled children, this is one we welcome....rather than queing for a long time to gain access to a ride at the theme parks, a disabled child and carer can go via the exit and get on the ride more quickly....it means we can enjoy a ride then have rest before going to another. Eve appreciates the wait in the shade, the opportunioty to watch her siblings having fun, yet still be able to take the rides she can manage. Rosie cannot possibly cope with queing in a crowd and would totally flip in minutes...this system means she too can enjoy a theme park....it is a system that is set up to enable families like ours to be able to access something otherwise completely beyond them. It is good to see ALL of our children having such fun!

Having spent a day enjoying life, and enjoying the sunshine it was time to head home! By this time Rosie's medication was wearing off and I hoped we would make it home before the siezures took hold again. Unfortuneately we didnt and had to stop after an hours drive and adminsiter more rescue medication.....I am so pleased that Sarah is able to accept Rosie with just as much love when she is being bitten, pinched, kicked as when she is being a giggly, loving, funfilled young lady.

We made the most of our stop and had a lovely snack and drink at the Little Chef and then made it home!

Memories...what lovely memories.

The trip deffinitely made us realise we had made the right decision not to travel to Cornwall...the two and a half hour trip was too much for Eve, and we would not have coped with Rosie for any longer in the car when her seizures kicked in. It took Eve the rest of the weekend to recover and she is still washed out tonight. BUT she enjoyed some of our day out both days...and we have those memories locked away now.

A few photos!