I often think about January 6th. We went in to find out our baby was healthy. Instead, my worst nightmare. We were sent home with statistics that said there was a 65% chance of our long anticipated baby living to be five if he had three life saving reconstructive surgeries. Without the surgeries, he would die within days. Guaranteed.
I remember that night praying that this would be the worst day of my life. To me, that would mean never having to say good bye to William.
We met with the cardiologists. They told us we had three options. Three? Yes, three.
One was called compassionate care. We make our son comfortable, and allow him to die. No.
Two was the surgeries. At least three open heart surgeries by the age of four. The first of which being the most complicated and risky pediatric surgery there is. He may not survive even that.
What is our other option?
They listed three things, but there was only one option. He would have the surgeries.
Part of me felt selfish. Is it fair to put him through the pain? Is it fair to launch him into a life of medical care, a life of uncertainty? He didn't get a choice. It was ours to make. Am I this desperate to have time with my son than I will risk spending it all the the hospital? He would feel a lot of pain. That was inevitable. He would experience fear at times. He would probably have delays. I would have to watch him undergo things that were unimaginable to me. And he doesn't have a chance to say no. Is that fair?
But a bigger part of me knew that he deserved any chance I could give him. I discovered others living with his condition and enjoying life. Thriving, even. I knew that would be William. As scared as I was, my heart knew that Will would succeed. Will would overcome his setbacks. Call it a mother's intuition.
I had to dig deep to find strength. But I knew what the right choice was. I filled my days with distraction. Watching tv and movies, reading, eating. I decorated his nursery. I had to, to avoid drowning in a sea of what ifs.
What if I did something to cause this? What if he can't live a normal life? What if he spends most of his life in the hospital? What if I don't get to hold him after he is born?
What if he dies?
Now, William is here. He sailed through the surgery, and is thriving during the difficult interstage period.
Some days are hard. There is a lot to worry about. A lot to do. Many appointments to go to, medicines to give. Every day we must weigh him, check his Sats, keep working on the bottle, manage his feeding tube. Often we have to retape the tube, and it hurts him to remove the tape. He hates being set on the cold scale. He hates getting his blood pressure checked, and they do it on all four limbs. He hates the echoes.
But those are just minor in our lives. We aren't ruled by our interstage monitoring. We have fun. We cuddle. We play. We read books. We go for walks. We dress him up. We take pictures. And William is happy. He smiles all the time. He enjoys life. And we enjoy him.
Our lives are so much different than Jared and I ever could have imagined. No parent pictures this when they imagine starting a family. Of course, we never thought this could happen to us. But one thing is for sure...
I wouldn't change a thing.