I have put this blog together to keep you up to date with Shae's heart journey - how she is going, what the doctors are saying and how the rest of us are travelling with her. For now, that is its purpose (though I have great aspirations that it will blossom into so much more as time progresses!).
After knowing that Shae would need a third open heart surgery for five years, we finally have a date to put on it. April 1st. Today that is 16 sleeps away.
On March 29th Matt, Shae and I will fly to Melbourne, leaving Asha and Ethan in the care of my Mum and Dad here in Adelaide. Monday, March 30th, will be a day of preadmission tests for Shae at the Royal Children's Hospital. From what I understand this will be a long day - starting at 8:30am and ending ??? Tuesday will be a day off and then Wednesday is the big day.
Some of the reality of what is to come has started to hit home. I am ok when I don't think too much about it, but when I do - well, then the water works start (like in the gym today - and it wasn't because the weights were too heavy!). Am I anxious for myself? Of course not. Something which happened yesterday morning pierced my "Mother nerve" in a new way:
Being Sunday, I had readied all the kids and was walking up the footpath with them toward church (a 15 minute drive from home and only about 3 minutes late - not bad!). Shae mentioned that she wasn't feeling well and then promptly vomitted in the middle of the path. Though this was a little inconvenient I had to give her credit for a) not vomitting in the car, which would have been MUCH worse; b) not vomitting on herself (very much) or me or either of her siblings; and c) not vomitting inside the church. So, while one of our fellow church goers went to get a bucket of water to wash away the evidence, I consoled my little sickie, diverted foot traffic and informed the troops that we were heading back home.
Asha protested the change of plan, but was also able to suggest an acceptable alternative. I dropped her inside church with some trusted friends charged with the responsibility of delivering her to her sunday school class and headed to Matt's parents place for a cup of tea with Shae and Ethan. I took Shae to the bathroom to clean up the few spots of vomit on her skirt, wash her face and freshen her mouth with some toothpaste. And then she said it:
"Mummy, I wish I was Asha."
"Why is that sweetheart?"
"Because then I wouldn't feel sick all the time...."
CRACK
The tears welled up and I was forced to confront how different her world is from mine - and that she knows it.
How must it feel to only have 70% blood oxygen saturation, when all I've ever known is 100%? Why are her legs and knees always sore??? I just don't know.
This surgery (called a Fontan procedure, for anyone wishing to research it a little) will sort out the oxygen thing for her. What a remarkable difference that will have to make! As for the legs - well, we're praying that will be sorted out too.
We have been on the starting blocks for this leg of the race for a long time now. The starting gun will soon sound and we will run. Sometimes strongly and sometimes not so well. It will be a hard race....
...but the finish line will bring overwhelming victory!!!
After knowing that Shae would need a third open heart surgery for five years, we finally have a date to put on it. April 1st. Today that is 16 sleeps away.
On March 29th Matt, Shae and I will fly to Melbourne, leaving Asha and Ethan in the care of my Mum and Dad here in Adelaide. Monday, March 30th, will be a day of preadmission tests for Shae at the Royal Children's Hospital. From what I understand this will be a long day - starting at 8:30am and ending ??? Tuesday will be a day off and then Wednesday is the big day.
Some of the reality of what is to come has started to hit home. I am ok when I don't think too much about it, but when I do - well, then the water works start (like in the gym today - and it wasn't because the weights were too heavy!). Am I anxious for myself? Of course not. Something which happened yesterday morning pierced my "Mother nerve" in a new way:
Being Sunday, I had readied all the kids and was walking up the footpath with them toward church (a 15 minute drive from home and only about 3 minutes late - not bad!). Shae mentioned that she wasn't feeling well and then promptly vomitted in the middle of the path. Though this was a little inconvenient I had to give her credit for a) not vomitting in the car, which would have been MUCH worse; b) not vomitting on herself (very much) or me or either of her siblings; and c) not vomitting inside the church. So, while one of our fellow church goers went to get a bucket of water to wash away the evidence, I consoled my little sickie, diverted foot traffic and informed the troops that we were heading back home.
Asha protested the change of plan, but was also able to suggest an acceptable alternative. I dropped her inside church with some trusted friends charged with the responsibility of delivering her to her sunday school class and headed to Matt's parents place for a cup of tea with Shae and Ethan. I took Shae to the bathroom to clean up the few spots of vomit on her skirt, wash her face and freshen her mouth with some toothpaste. And then she said it:
"Mummy, I wish I was Asha."
"Why is that sweetheart?"
"Because then I wouldn't feel sick all the time...."
CRACK
The tears welled up and I was forced to confront how different her world is from mine - and that she knows it.
How must it feel to only have 70% blood oxygen saturation, when all I've ever known is 100%? Why are her legs and knees always sore??? I just don't know.
This surgery (called a Fontan procedure, for anyone wishing to research it a little) will sort out the oxygen thing for her. What a remarkable difference that will have to make! As for the legs - well, we're praying that will be sorted out too.
We have been on the starting blocks for this leg of the race for a long time now. The starting gun will soon sound and we will run. Sometimes strongly and sometimes not so well. It will be a hard race....
...but the finish line will bring overwhelming victory!!!
Thinking of you all.
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