Oh where to begin.....

Since Samuel came home on Wed, life has been a whirlwind! I had dreamed in my little fairytale way, that we'd get home and it would all be sweet and lovely and celebratory. Unfortunately

there weren't 2 other kids in my fairytale, wanting to be the main character! So although there was great delight .... the photos were taken which were posted a few days ago as we arrived back..... then I'm guessing 45 mins later it all turned to custard!

I woke on Wed and seriously I was just brimming with joy - I would tear up just thinking about taking Sam home and amazed at his smiling little face that had made it through so many tough times.... oh us people were so made to want to praise and be thankful and it was just wonderful to be in the hospital room and sing and pray and cry with Sam - all joyful! Then it was crazy trying to get all the pieces of the puzzle together to get out the door..... so much so that I didn't have time to do my hair properly or put on some decent clothes.... so my vanity was put on hold - bring on photo shop.... So after getting home and all our various expectations clashing - the girls were excited to have both parents home so instantly wanted to sit and read with us! Um the conversations went something like this: '... yeah there is this little guy next door that is screaming in pain and needs his drains emptying.... and I'll just be a minute... oh and there are 2 other delivery guys at the door.... just a minute.... we've just got to do TPN with the Biomed CEO..... just a tick... yes I do love you as much as Samuel.... how long is a minute anyway Mum???.... I'll be just another minute...' yeah, you get the drift... they were grumpy, I was frought and Francis was trying to keep the peace. So at around 11pm we collapsed in beds.... I say beds as one of us sleeps in with Sam and all his gear and we alternate so one gets a good nights sleep if the other doesn't.

So it's been busy sorting out his routines at home. Although we were doing a lot of his cares in hospital and administering his meds, here for the first time we had to draw them up and make sure they went in the right openings! On the first night I was interrupted half way through drawing up his 5 meds. I carried on and after I had given him 4 of them I looked down and saw I had 2 syringes of meds left! It was awful - I froze and freaked and Francis came and we sorted it out. He has 2 meds that are the same colour and the same amount, so Francis and I were busy licking empty syringes and bottles to match the flavours.... thankfully I hadn't given him a double shot of something. So that was another learning curve and we have devised a simple system of drawing them up and noting them.... doesn't sound like rocket science, but having never done it before and, in the midst of other tasks for Sam, having a system is good. So we have many little 'systems'. Tubs of sterilising water for syringes, tubs for his colostomy stuff, other sites, meds etc etc....

I was feeling really anxious for the first two days, when I realised I was dreading Sam showing a temperature or one of his wounds getting infected. I was dreading so many things that 'could' go wrong and we'd end up back at Starship. So yet again I've had to tell myself off and in the words of wisdom from the bible, 'be transformed by the renewing of the mind'. The mind influences our actions..... and I don't want to waste even a day ..... so I plod on knowing that each morning

when I wake God's help, mercy, forgiveness and joy are the foundation my mind needs to shape my day.

To see the girls wake up and race in to see Sam is delightful. They are desperate to help, so I let them do what they can - open syringes, choose his clothes etc - they love it. Sam is really alert and responding to the constant interaction. As you can see in the video above, he can be very chatty now, he copes well with ABBA and likes to dance to the radio - of course he has no choice in either, but it's fab to have him in our world. I'm finding I'm having to force

myself to stop being so task orientated and take the time to interact with Sam. It's so tempting after all these months of having no control to try to take it all back .... but although we can get some daily plans in place for his care, life is still uncertain - as it is for everyone. So I'm learning it's a better use of my time to sit and coo with Sam and let the washing stock pile a little.... not easy, but I know I won't get to the end of my life and wish I had spent more time ironing! BUT we are trying to enjoy Sam - our 'son' Sam, not the 'patient' Sam. On good advice from the nurse specialist we are trying to 'de-medicalise' him and do what we have to, but also be relaxed with it. After 4 days we're not there yet, but enjoying the process.

Last weekend the girls enjoyed the weekend at the beach with their cousins while we prepared the house for Sam's arrival. Today was another beautiful Saturday here in Auckland, and Francis took Sam and the girls to Mcdonalds for an ice cream followed by Cornwall Park for the afternoon whilst I got on and created more systems and tidied the house. We are weary - as much from the thinking and learning as opposed to sleep deprived... but hey what family with young kids isn't.

Anyway I must go - Sam's asleep so I can't use him as the excuse for the washing stock pile anymore! I've actually missed not having the time to blog these past few days - it's been a cathartic exercise for me as I'm forced to stop and take the mish-mash of thoughts and events and formulate them into prose.

Shirley