Saturday, March 1, 2014

A Big Week Ahead

So we had a fabulous time in Australia . It was very odd being separated  from Sam and it took me a couple of days to not feel like my arm was missing.... But it was lovely to have whole days and whole meals and whole evenings without drains to do and clock watching. Francis and I managed to rise to the challenge of riding even the scariest roller coasters so we could shake off the dinosaur label our girls see hanging around our necks. Bizarrely the first two roller coasters I went on broke down and we had to be rescued from!  The sun shone. The sea was warm, the sand was white and the time with just the four of us felt like a luxurious gift.

I felt totally peaceful that Sam was in great hands- he has about 6 'mums' that love and look after him, but it was a long week for him and we had a few phone calls with him where he was begging us to come home.... I got the biggest cuddles when I got home!

Francis flew from Brisbane to Papua New Guinea and is due home tomorrow, so Sam is very much looking forward to that after missing his dad for two weeks!

Tomorrow is March.... On Tues 4 March Sam and I are checking in to Starship surgical ward ready for major surgery on Wed 5th.  He is having his large bowel connected to his small bowel .... It is huge progress and we are excited about what this could mean for him. For the past few months we have been preparing his large bowel by taking the output from his small bowel (liquid poo) and pushing it in a catheter into the bit of large bowel that protrudes out his tummy. It"s been amazing to see him feel the sensation and push out a prize in his nappy - he is so proud of his new skills and seeing the delight on our faces and the whoops and hollers of congratulations! I am putting around 60 mls in twice  a day, but post surgery all of his feed that goes into his GJ will go through - 800 mls per day. We have been told to expect to be in for a week at least. It will be a huge change for him, a big op and a wound to heal, so we are excited at the progress yet aware it will be another big challenge for this little guy. He is so brave, so sweet and full of  fun, And our hope is that this surgery will improve the quality of his life in a huge way.

We respectfully listen to the risks associated with the surgery and the possible complications then we humbly kneel before God and commit Sam into His care, asking for God to do immeasurably more than we can even dare to dream or hope for.  We pray for the medical teams and surgeons and  are so grateful for their skills and care.  Naturally on one hand we are sad that our precious Sam has to  didn't endure another surgery, yet on the other hand we are totally amazed, thankful and delighted that he has come so far - this is nothing short of miraculous and our hearts are full as we think of the gift of his life - he is four months from turning five.... FIVE... I can't write that without grinning....  And this operation is going to help his body accept more nutrition and open up possibilities of feeding ...  Wow

At bedtime last night as I lay with the girls and did our prayers, we spoke about how God can be just another word for Santa Claus or Online Shopping - our prayers can just be a shopping list or Christmas list of our wants....  Thinking about Sams progress and this coming week has highlighted to me how knowing Jesus opens up a whole dimension to life - a spiritual one where God not only nourishes, teaches, loves and challenges me, but one where I can express my concerns, fears and joys. I can not fathom this journey without either Gods input or His listening ear as my relationship with him gives me an avenue to share the human emotions of thanks and joy, which turn to praise and worship of a loving God.... And nothing seems more real or normal than that.

So as we prepare for the week ahead in practical ways (meals in the freezer, piano practices for girls, more poop recycling etc) my greatest prep is when I lie in bed each morning and say to myself, This is the day that god has made, I will rejoice and be glad in it" - that reality gives me the confidence to face the day!


Wendy said...

Loving hearing what's happening in your world. Will be praying for his op, the surgical team and all who love him. x

Wendy said...

Love reading your blog. Feel like I'm peeking into your window! Praying for the surgical team, and all who love Sam and of course the star of the show~Sam! xox