Monday, May 19, 2014

I don't know why.....

... last week felt like a tough week. Nothing bad happened, we didn't have a Starship sudden visit and Sam was happy. I think it was because Sam is about to be 5 - June 6, he will turn 5.... and everyone is so excited about that.... 5 is such a defining age in NZ - it's when you normally start school and life seems to begin with a vengeance. Normally you're excited about making the birthday cake and getting things ready for the big day.... but last week I spent it writing reports with my case worker about all the things he can't do, so we can get funding for an assistant at school. Last week we found out that the last operation hasn't worked and it needs to be reversed... he's going to have a poop bag again - another surgery - another physical assault on my darlings already scar ridden body..... as I lay beside his bed listening to the pumps whirring in the night I just felt so sad that my wee boy has to be hooked up every night and the abnormality of it all just flooded in. Normally I find it cute and endearing when my little boy asks me if I am going to do the blue or the black kidney drain first.... last week it made me cry and I was deeply sad that I have to stick tubes into him every 3 hours to drain his kidneys - it didn't seem cute anymore.... As parents we try not to compare our kids, but who are we kidding - we all do it....'look how tall little Johnny is now!', 'Didn't so and so do well in the talent show', 'gosh she's an amazing pianist for her age' etc etc.... With school on the horizon (Albeit a rather late horizon as we wont be sending him to school for a term or two), all the things he can't do are becoming amplified. He won't be able to join in with any swimming as he can't get submerged due to his central line. He will need assistance to get from A - B and to take part in any physical activity... he will need a safe and dignified place so we can take his clothes off to do his drains etc... he doesn't eat lunch or play lunch.... blah blah... At this point I must say that the sadness is mine - so not Sams. I'm not depressed or feeling negative,I'm just being real - I'm not always chirpy and sometimes I feel overwhelmed. Last week was one of those weeks. I think too some comments that wouldn't normally affect me, did. One woman asked me eagerly, 'how is Sam, did he start eating this week?'. Normally I would just think, 'oh you really have no clue do you... would you ask a diabetic if they have given up insulin this week?'....but last week it was hard to hear.... And I'm ok with having a bad week too - I think it's part of processing all this 'stuff' and coming out the other side. I read Ecclesiastes 11 v 9 'As you do not know the path of the wind, or how the body is formed in a mother's womb, so you cannot understand the work of God, the Maker of all things'. I've had the privilege of talking at various meetings about our journey and the lessons we've learnt and how God has sustained us. Two weeks ago I spoke to the NZ Elim Senior Pastors get-together - it was a huge privilege to be asked. As I finished I flashed up on the screen a photo of one of Sams medical letters... it starts with his name and then has a subtitle PROBLEMS... then it has 1 - 23 listed.... it literally takes up the first full page of his medical notes...all the things wrong with him medically. Then I showed them a photo of Sam just enjoying life. I'm so glad Sam can't read - he isn't aware of the list... he doesn't wake each morning and go, 'bummer I've got gastro intestinal failure and kidney issues and chronic lung disease...and, and, and. Instead he wakes up and shouts, 'Are we going to kindy today?' This morning his opening words literally were, 'Can we limbo today Mum?' - he is not defined by the list as he's not aware of it. Somewhere sadly we learn to read and take notice of the various lists floating around with different peoples perspectives and we let the list define how much we risk and what we do. I know I have a lot to learn from my darling boy that is so full of life and joy. He's not limited by the 'list'. I don't want to be either. This coming weekend I am going down to Invercargill to celebrate with my big Bro a 'special' birthday.... 50's the new 40 right? So Pete's going to be '40' and I am so looking forward to celebrating with him and his family and all my siblings - all 9 of us in one place for the first time in 5 years. My brother is amazing - he too has a medical list floating around that has a few numbers on it, but he is courageous and determined and I am encouraged as I watch and admire him from afar - getting on with each new day, defying his list and making the most of the potential of the day ahead. On Wednesday I am heading into Starship to meet with the surgeon and gastro specialist to talk through timings and details for Sams next operation. I am not looking forward to it, but after last week I am feeling strong again and we can do this. I leave you with a picture of my boy defying his list.... this makes me smile a lot!...and then I need to find the broom handle as I have promised Sam that we will limbo when he gets home from kindy! If you're really lucky I may take a photo for the next blog!

3 comments:

Mike Bee said...

What a great smile.! Beautiful

Anonymous said...

Thank you for sharing Shirley - you amazingly beautiful and caring wife and mother...
I cry, I laugh and I continue to pray for you all...
stay strong my dears

Von

The Doughertys said...

Love you Shirl, you are one of the best. Sam is blessed to have you. xx