The Power in Facing the Possible

Nobody knows what tomorrow brings.. And facing the unknown is scary. This is true for anyone-- even with the cleanest bill of health. 

Having a child with a very rare and specific heart defect seems to make this fact ever more apparent. 

I've joined a few heterotaxy and other heart related groups on facebook. Some of those groups have put me in touch with parents of children with similar diagnosises. It's kind of a double edged sword. Every day, kids like Jack pop up on my news feed. Some doing well, celebrating heartversaries (anniversary of a heart surgery) and going home after long stays at the hospital. I love seeing others side by side pictures of their kids post op and how they look now. It's incredibly encouraging to see these kids growing up to go to school, play soccer and live relatively normal lives. 

Then there's the other side of the sword. I also see the kids that are hitting those dreaded bumps in the heterotaxy/cardiac road. I read parents requests for prayers and positive thoughts for their little ones that aren't doing well. I read the updates that they've been in the hospital for a month with no end in sight and how heartbreaking it is to watch their child suffer. I see pictures of sick kids hooked up to so many IVs and leads I wonder how the doctors and nurses even keep them all straight. I see kids waiting for transplants and surgeries. I see the hopeful moms and dads slowly losing steam and their once bright blaze of positivity and hope all but snuffed out, barely leaving a visible ember. 

I think it's important to see the good and the bad.. The positive and negative possibilities. Is it scary? Yup. Does it keep me up at night? More often than you would even imagine. Knowledge truly is power. Seeing all that could be for Jack just helps me feel that much more prepared. And being prepared makes me feel powerful.. As if I have the upper hand over the future. If I believed that ignorance was bliss and turned a blind eye, it doesn't change the fact that hear kids in a bad way could be Jack someday. Just because I pretend it's not a possibility won't magically take Jack on an easier path. The sleep you lose when your child is facing adversity can always be made up. The work you have to miss is just that.. Work. It will be there after the dust settles. The mental and emotional turmoil, however is the part that can take you by surprise and sucker punch you in the gut. It's something that sticks with you. It's the hardest part as a parent. If refusing to be ignorant to these images and these other families stories helps me better prepare my mind for what's to come, I will follow every heartbreaking word. It will only help me be the best parent to Jack with the best state of mind when our time comes. Our turn will come, I accept this as an inevitability. And I choose to be ready for it.