As I sit here watching machines keep my daughter alive. Tears flow. I cannot hold her. Can’t really talk to her cause it sends her numbers into crazy land. No one talked about how being a parent would mean just sitting still and quiet in a dark hospital room holding your daughter’s hand. Pleading, begging, praying. So much life training I did not receive and have to just learn as I go.
– I missed the class in college where a cold can nearly kill your child. And then when you overcome her cold, 12 million other new problems that are even more serious present themselves.
– No one covered how hard it would be to watch your kiddo #struggle and get worse every day.
– I never read the book on how to be two places at once time. At home where my precious three big kids need me and are all so little to be processing big, scary things; but here at the hospital where we are fighting for life.
– The #friendships that would become so one-sided because you no longer have anything to offer back, and the loss of friendships from people who for whatever reason make this about them and cannot enter into this world with you.
– The sheer #exhaustion. I used to think I was tired. How I long to go back to complaining about getting only 3 hours of sleep a night. 
That also doesn’t account for the emotional, physical, spiritual toll it takes on you.
– The #loneliness. Sitting here all day, every day. You cannot even imagine until you are in it. And this is so a million times better than Hell. So at least that’s some perspective. 
But it is definitely hell on earth.
– The #fear. We are currently on #lifesupport. But then just for fun we are also monitoring issues with her blood, her stomach, her nutrition. Not to mention she still doesn’t have her seizures under control and oh yeah, a massive unrepaired heart defect. And some how you have to be present and dialed in to continue to #advocate.
So today again. I will sit here and pray and hold her hand.
#piculife #lifeofourlittlepeanut #hospitallife #downsyndrome #babiesofig #redhair #princesspoppy #ventilator #ngtube #heartwarrior #heartbaby #dsdn #infantilespasms #warrior #fighter #avsd #alittlefaithisallihave #evenif
