This is a big deal

so one of the things about CDH is that explaining to people what we are facing is so hard. People get the medical basics of CDH, that is easy enough to understand. Most of us have heard of hernias before. People also get that there is chance Maddie may not make it but see that she has a 90% survival rate and become really hopeful (which is wonderful).

But honestly, it seems like most of our inner circle are failing to grasp the huge fight ahead of all of us. heck, sometimes we do to.

- we've all heard of premies born with underdeveloped lungs and prayed for them
- we all know of babies that have had to face surgery in the first few weeks of life and our hearts have broken for them
- we know know of babies who were born with weird abnormalities and their families were thrust on a strange journey of healing while we waited hopeful for world.
- we've heard of babies with heart problems, kidney problems, inability to digest, struggle gaining weight. and we've done what we can to stand by them and their families.
- we know kids who are deaf or physically disabled or have severe learning disabilities and we've adjusted so that we can play with them.
-we've all seen people in the store with hoses and wires in their nose and quickly looked away

CDH is a random combination of all of the above, plus possibly more. We won't know all of Maddie's struggles for years to come, but we do know that just surviving isn't going to be the end of her fight.

basically, i just really want everyone to understand that this is a big deal, not a simple surgery and everyone goes home happy. that would be amazing and a miracle and something to pray for.

but please work to accept the reality that God has given us this huge struggle. and i keep writing about it and reaching out to you because my family has no chance of making it through this without you.