I can never seem to finish these stupid bog entries... It's ike I run out of words- and then out of patience with my broken keys.
It's a miracle- the amount of peace Nick and I have felt over the past weeks. I think we dealt with a lot of turmoil when we were diagnosed prenatally. Back when people were praying for healing directly from God- I was preparing myself in case God's plan wasn't in that direction. I was in a giant amount of turmoil through the pregnancy, off and on. Crying and feeling despair at moments... But preparing.
I think perhaps I mourned over my idea of a perfect situation long enough that when the time came- I was as ready as I could ever be. Poor Nick, having to hear me going over and over how hard it was going to be and how I was never going to be ready.
So far, I've had one day where the depths of despair hit me. Day 3. And the rest of this time has been spent in waiting, hoping, praying, begging, and of course with Judah.
The thing that is bugging my head lately is the future- because we have no idea where in heavens name we will be in the months ahead. We come back for the second surgery in March (or earlier) and our lease is up in January.
This has kept me wondering... Why did I get an upstairs apartment? Why? Can I even imagine the appointments (3-4 a week for Gabe)- going up and down stairs with two- and possibly a feeding tube set up, getting them in the car. You can't eave one alone in the car where you can't see them... This is my stress right now. Haha...
Here we are recovering from surgery- the bumps hitting us and my big fear is how I am going to get my boys in the car for appointments. Silly me :).
Nick and I were discussing how much amazement we have that we feel peace right now, when our family members have such turmoil still. We prepared ourselves to fight for our son. We knew that staying awake all night and not resting when we needed to would not change his outcome. We told ourselves that we would take it one minute at a time.
The reality is, after all three surgeries, his expectancy is 15-25 years. He will not qualify fr a heart transplant because of Downs Syndrome (Trisomy 21). HlHS is not a heart defect that can be fixed.
So... We are not waiting for them to fix him. We are enjoying his life as it is. We are thanking God for each minute, each day, each week, each month, each year, and so on.