Thursday, November 29, 2012

Waiting Four Years for a Date

It has been four years since Sam had open heart surgery. Sam has a date for his catheter procedure-the 20th February, 2013.  It is taxing being the parents of a heart kid.  We live each day with gusto and get swept up into the normality of life for a while and then are pulled against our will back into the reality of having a child with a broken heart, one that is only half of what it should be. 
Don is getting involved at work, enjoying the job, building new relationships, learning new things.  I am doing mum things, writing, getting my Avon business off the ground and making new friends.  Jack is just beginning Grade 1 next year.  And Sam lives a happy busy little life with me for the moment, before he attends Kindy next year.  There are many minutes in the day when I feel 'normal' and then many when I don't. Like:
  • when I have to carry Sam around town because it's hot and a long way to walk and his little heart can't take it.  Only to have someone tell me that I should make him walk and that it's good for little legs to have the exercise.
  • when I have to fill out enrolment forms and list his medical history, medications etc.
  • when I have to remind myself to let Sam eat anytime to add weight to his slight frame.  And then have people comment on how small he is for his age and ask me what he eats.
  • when I have to give him medications at night that are equivalent to rat poison.

I don't want to plan for him to go and have the catheter, but I must. The catheter and surgery will both be at the Mater Hospital in Brisbane.  At this stage I think Sam and I will be travelling down alone for that one.  And then a week or two following he will have the Fontan procedure, open heart surgery, to complete the circulation in his heart.  We are hoping and praying that there is some way that Don and Jack will be able to travel down for that and stay for a few weeks.  At this stage we are pretty sure that the government will only pay for Sam and I to travel, but we will find out more about this later.  There is so much I could worry about such as Don's work, Jack's school, money, rent, bills, my business but I am striving with every ounce of strength that I have to give it all to God and leave it there.
It is like Paul says in the bible, I struggle so much with the flesh part of me wanting to rise up and try and control everything when I know I have no control at all.  God has shown me that the way is clear and that I just need to trust Him, but I must tell you that that is easier said than done. It is a battle to keep your head clear and your heart in the right place. And in between now and then I want to enjoy the trouble free time that we have, celebrating Christmas with family and enjoying a few weeks holiday together over the Christmas break.  Even as I write this my heart quivers within me.  Sam does not remember any of what happened in the first year of his life, but I do.  I remember it with stunning clarity.  But I also remember the strength of my God and all that he has done for us.  And so although I am yet to believe them fully I claim God's promises to us once again.

Sam will live and have life in abundance.  He will testify to the nations of his healing

Things never happen the same way twice dear one.  If you were any braver, you would be a lioness.

May God increase my faith and may He give us His strength on this path He has set before us. His promises are true, no matter how I feel.


Anonymous said...

My love and prayers are always with you all. We know he is the best of hands.

Nicole said...

Thanks CB, love you. xx

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