Greater than I ever thought possible

Seven years ago this morning I was anxiously awaiting for Phil, his mom, his sister and my parents to arrive. They needed to hurry up it was almost time. I was close to falling apart and no one was here yet. When the medical staff came into Madelynn's hospital room to wheel her down for open heart surgery, still no one. When I thought I was at my breaking point, the cavalry arrived. I was not going to be alone when I surrendered my child to the surgeons. Everyone who promised they would be there, was there,  they all kept their promise.

Promise is a dangerous word and should not be taken lightly in an capacity. There are very few things that can be promised and kept forever. As we have traveled this heart journey with Madelynn, I have had to break promises because I tried to live life like before her diagnosis. I could no longer do that. I was learning the hard way......we were a heart family and we needed to find the new normal. I also learned that it is not impossible but you need to be open and accepting to your new life.

I can promise you that seeing your child right after open surgery is NOTHING like you thought it would be. When I meet a new family and they are facing surgery in the immediate future I always ask what has the doctor told you about after surgery. I was not prepared for what my child would look like after surgery. My best description is stunned silence. Thankfully the nurse caring for Madelynn knew that deer in the headlights look and went into action. She just took the steering wheel and lead us into our journey and explained EVERYTHING.

Realizing that not everyone will have a stellar nurse like we did, I can only remind you to ask questions and LOTS of them. If you don't know, ask. Don't be afraid to ask the same question more than once. Because you are in a form of shock make notes to ask questions later. If I have learned anything in this journey it is to ask questions and take charge of your child. Who will fight for them if you don't? I feel all heart parents (ok all parents) should feel empowered to fight for their child. If you won't fight for them who will? It was not an easy journey. I watched Madelynn fight for her life everyday. She never gave up so why should I.

Sadly while I was fighting for her I lost friends. They do not understand your journey and sometimes are too afraid to take it with you. People I really thought were my friends disappeared and never returned. However, you all know after the rains there is always sunshine and the promise of a new day. For me it was new friends. Obviously I would have never made these new friends with out this horrible experience. But I would never trade them back.

They understand nerves before a heart doctor visit, tears when today was not what we thought, and the urge to vomit when you hand your child to a surgeon knowing they might not survive. They understand some days you will find each other on facebook at 2 am because worrying is keeping you up. There are things you don't need to speak about because it is just understood and accepted for face value any day of the week and twice on Sunday.

I really thought I had life together before this journey. God had other plans and gave me Madelynn with all of her surprises. I would have never chosen this life, EVER. But I am here, I am living it and I am so lucky for Phil, my children, this crazy journey, my heart family friends and all that life has in store. What I can promise you today is that there is life after a CHD diagnosis. Maybe not the one you thought but it can be GREATER than you ever thought possible if you embrace it and live IN every moment.

Happy Heart Day Madelynn!! I love you to the moon and back!! Thank you for making my life greater than I ever thought possible.

Love, Mama

TTFN~