Once we have come through the valley of catheterisation, we then come to the foot of the looming mountain of Fontan. At least this is our aim. If not we could be slung into vast space into wait and heart transplant land. (Sorry, I need to make light of this, otherwise it could eat you up inside).
The wait makes me weary. The planning has to be done, but most of the time I procrastinate, finding anything to do but what I know I must. I spend some time each day with God just chilling out and listening to some music. It is when I feel him nearest and as I close my eyes for just a few minutes I feel His peace settle over me and I can then carry that peace with me through the rest of the day. I know God is always with me but these times are special to me.
I feel so guilty sometimes just wanting for this time to come and go, when I know Sam has to endure more pain. What kind of mother thinks like that? Shouldn't I want to be waiting as long as possible? But I don't, we have been waiting since Sam's diagnosis before birth knowing that this day was coming at some point, hoping that it never would. I remember meeting families with their children in hospital having had the Fontan procedure when Sam was only having his first surgery as a baby and thinking how blessed they were to be on that end of the three stage procedure than where we were. Now, I don't know what I feel, definitely not blessed in this regard.
Sam is impatient he just wants to go and get his test and operation over and done with so he can go back to Kindy and come back and see Jack. In his words:
I'm just gonna say, Hi Dr Gooi, I'm here to have my test heart. And then I will go to hopstibal and then I will come home and say bye. Dr Gooi is funny. And I will have to wear a maks (mask) and I will go to sleep'
Even after the Fontan, Sam is not fixed. His heart cannot be fixed with human hands. HLHS is not a curable condition. They just try to make the heart last as long as they can. Some hearts respond really well to sugery, others do not. We don't even want to go there yet.
This blog can be pretty messed up some times, but that's because my life is pretty messed up in many regards. I am not trying to present some image of a woman who's got it all together, because I'm pretty much as far from that as you can get. But...I do know that God cares for me and my family and I can speak of his miracles and His love for us, even in our disrepair. And when He gives His word he never goes back on it.
God and Family
Family and God
I just can't imagine how our lives would look if those two were ever separated. I'm not even going to try.