Often people comment how strong I am, or how hard I work at keeping Sam going.... that's cos I don't always let on about the tears and the bad days...and today was one of them. I'm no stronger than anyone else, we all have to face what our day holds...and we all have choices to make in how we respond. Some days I choose to be patient with my kids, others I'm too tired and I choose to be lazy and shout at them....hopefully I'm choosing to grow up more each day and choose the adult response... but sometimes I just want to be a kid and have a tantrum and let someone else take control. But whether I'm having a good day or a bad day, when I collapse in bed (or on the futon beside Sam's cot) I stop and acknowledge that God is in control...and that brings renewed strength - it doesn't take away the sadness or the longing for things to be different, but it does bring peace and new hope for the day that is just around the corner and removes the burden from me to have all in control, as someone much greater is.
Today started off with the girls and Sam in the car driving in the dark to get to Starship before rush hour in Akld so we could be in by 8am as needed. It seemed like an adventure, we sung and laughed our way in. When we pulled up Sam started clapping and 'woo hooing' as he knew where he was - he loves seeing the nurses and Drs! Then it was so lovely as we waited to take Sam down to theatre as all the various medical staff were genuinely delighted to see Sam walking around and talking and doing so well - felt like arriving home.... Then we walked to pre-op and then Sam started realising where he was and started squirming and shouting, 'go home, go car now!'..... then after I had gowned up in the lovely blue apron and cap Sam was screaming 'take off Mummy!' and trying to pull it off as he definitely knew where he was going. 17kg of writhing is physically demanding but we got into theatre and the staff are so awesome and kind and caring ... Sam looked up and the big overhead theatre lights really scare him and he wanted out, but it didn't take long to get him asleep and I left as the team did there stuff.
Today wasn't even an operation - nothing was being cut out or recreated, he was simply having his teeth cleaned and then capping his 4 molars. It all took about an hour - probably his shortest procedure so far, but when I stopped and thought about how my 3 year old boy needs a general anaesthetic to clean his teeth it made me really sad. The fact that he vomits so much his teeth are being damaged - it makes me sad. The fact he doesn't chew sweets or suck lollipops like kids should.... I found it all hard today. Even the fact that so many people working at Starship know Sam and that Starship feels like home made me sad.
When I met Sam from post op he was really agitated and vomitting and just wanted me close. Maybe I find it hard because now that he can talk all I kept hearing was ,'Mum HUG, Mug sick' - that is my command to get the vomit pot.... so I hugged him and tried to help him get settled but it took around an hour.....tonight my neck hurts from the weird angle Sam likes hugged on - when he is sore or needs comforting he wants his whole face on my cheek - it's so lovely and I don't care that he's vomitting and snotting.... but I wish my 3 year old boy needs comfort from having scrapped his knee climbing a tree or falling off a swing....but he needs comfort because he has had 4 metal caps forced onto his molars and he has been intubated and has a sore throat.
He settled down and we were discharged about 1pm and came home via the fruit'n'vege shopping - normal life carries on too. He was cuddly and unsettled all afternoon and we are giving him regular pamol as I'm guessing his jaw must be throbbing up a storm. Tonight after I hooked him up to his 2 pumps and put him in bed and he finally slept I just looked at him and cried - cried for all the stuff he has to go through....cried because I was just emotionally spent from physically holding and soothing him all day....cried because I feared if I didn't I would implode or crumble..... but through the tears there is huge admiration for one of the happiest most joyful kids I have ever met inspite of what he puts up with.
Today I bumped into other Mums that have their own challenges of raising special kids with medical conditions and it was so amazing to see and hear the progress their kids are making. It is so great Sam has access to free dental care and that he is being so well looked after - amazing. But I guess because Sam has been doing so well and going from strength to strength it is hard seeing him struggle and the reality of the limitations of his conditions hit me. Now Sam has bling in his mouth - it looks alarming out of place in a toddler.
Right now he is fast asleep and hasn't woken in 2 hours, so that's a good start to the night...but then I get the bed and electric blanket and ear plugs tonight as Francis gets the futon (um... don't worry Francis and I have splashed out and have our own sets of ear plugs).