I wish God would have given me a magic mirror many many years ago for just a peak, just a snippet of what life would be like now.
When she was born and the nurse handed me a packet of what VACTERL was and I was so doped up on pain meds that I was laughing while reading the oh-so informative packet. Really, no anus....where was THAT chapter in the "what to expect when you are expecting". Not in my edition. No husband around because he was sitting in an icy cold NICU waiting room wondering when my daughter was coming out of her life-saving surgery and what the heck was going on. Or hearing babies cry down the hall on the maternity floor and all I had was a picture to her to look out-I couldn't see her, hold her or feed her. Those 72 hours were the worst ever. No husband and no baby. That sucked.
Or the horrible months of summer when she turned one and was taken back into the OR for 6 weeks straight for our surgeon to destroy her but*t hole even more. But more so in the nights following the surgery, when her temp would spike over 105 (I didn't even wait for the stupid thermometer to finish beeping) and I would literally throw her out of her crib into her bathtub of COLD water, pjs at all, at 2am only to her the surgeon on call tell me that is a NORMAL REACTION! WTH? SERIOUSLY? And later that summer, when we had to do other painful procedures to her and I expressed concerns that she was in pain, and I felt that something wasn't right, I was called "crazy" to my face and perhaps I should get help. And that my daughter has a low tolerance for pain. Pure hell-watching someone hold down your child as they escort you out of the room. And nothing to stop it.
Or the next summer that I had to torture her with solid metal rods(that get progressively larger) where the sun don't shine, twice daily, for months, to keep that 100K but*t hole we got made for her in Cincinnati from closing up. How I used to sob afterwards because there was no other choice so it HAD to be done. Not what I wanted to be doing for the next 8 months.
Or when we finally moved to a city who evaluated our daughter for speech and OT and informed us she has a 18 month delay and WHY didn't be do anything before (thanks Virginia Beach) and that we would shell out over $1200 for a summer of intensive speech/OT (thanks insurance for the lack of outpatient coverage) and prayed that maybe one day she would wear sandals without socks, pjs without long pants, go into water without screaming, play in the sand....that summer was hard too-new house-new city and a big ol IEP that became our best buddy.
And then today....as I was zoning out slightly at the beach watching her play with other 4 and 5 year olds laughing and splashing in the water and having the time of her life it occurred to me that all the tears that I have cried, all the heartbreak, all the bitter words spoken, have been worth it. She is my normal, life loving, 5 year old child of joy
If only...if only I could have seen into this summer all those years ago to know that those experiences were just little bumps in the road.