Saturday morning April 16, 2016, I woke up and had the urgency to go see a movie with my daughter, I quickly looked to see what matinees were playing and my eyes fell upon "Miracles from Heaven" ... Loving the thought of miracles I urged my daughter to wake up to see the 9:45 matinee. I haven't seen a movie in at least 6 months , but I really wanted to make this happen today. We arrived a few minutes before 10 , grabbed a popcorn and ran into the theatre to get a seat only to find out that we were the only ones in the theatre.. nice :) I really had no premise to what we were about to watch other than that the title sounded good and Jennifer Garner was in it... One of my favorite actresses. Ten minutes into the movie it started to unfold why my daughter and I were there. It was about a family, an illness , faith, lack of faith, fear of the unknown, and fighting for your child in a sometimes cruel world. This movie struck a chord on every single level of fighting for my daughter's life. I remember the physical therapist strongly suggesting to take her to a cardiologist because of her breathe pattern. I remember going to see the cardiologist , the tests, and then the sit down with the Doctor's diagnosis of open heart surgery, my heart broke that day and my faith cried out... "Why" , wasn't the pregnancy hard enough God? Why is my joy being stolen from me? this is supposed to be the most amazing time in one's life? right? I felt alone and that God had turned His back on me.
November 1998, the surgery date was scheduled for January 3rd. needless to say, Christmas was tough to get through. Immediately after Christmas my daughter came down with Bronchitis/pneumonia. Her little heart was fighting so hard to pump and it had expanded almost the full width of her chest , the surgery had to be moved 2 more weeks in the hopes that she would be clear of pneumonia and strong enough to handle the surgery she was facing.
January 13, 1999, was the new surgery date.
3am, I went to her crib, she was so innocent and perfect and beautifully sound asleep, I picked her up and carried her to the car, tried to conceal the tears for fear of her seeing me, and drove to Cedars-Sinai. The doctor met us in the lobby just next to the elevator, I could barely stand. I kissed her cheek , prayed for God's mercy, handed her to her Dad and turned my head as tears poured down my cheeks.
In the waiting room, we sat and waited..family had arrived and we all held hands kneeled and prayed. After about 20 minutes a nurse came out to say that she had been sedated and was comfortable. I kept replaying the surgery over and over in my head, I couldn't believe what was taking place behind those closed doors. A woman in the waiting room, who I did not know, handed me a teddy bear with a beautiful card of hope and prayers, then a peace came over me and for a few moments, I could breathe. That was the first peace I had felt in months.
4 hours later the surgery concluded and my little girl was in recovery...She had come through the surgery beautifully and now it was time to heal her heart... and mine, but the journey had just begun...
I have told this story to maybe a handful of friends over the past 17 plus years, but to write it down and revisit it , is a whole different story. Since Social media, I have seen many posts of family's facing the exact diagnosis, I want to reach out and hold their hand through it and tell them I understand and that they are not alone, and I do reach out when given the opportunity, but we all have our own unique journey's and God speaks to us all a bit differently , often it's in times like these we realize what truly matters and when we look back, as in the movie, we can hopefully see the tiny miracles along the way... My prayer for you is that you never cease to find all the tiny miracles in your life. I prayed for the miracle of God taking away Down Syndrome from my daughter and that when she was born the doctors diagnosis would have been wrong. That was not God's plan. He had a different plan and I've been watching it unfold for 17 years. Amazing intimate friendships have been made, more than I could ever have imagined, an outpouring of love to my daughter that makes me speechless. Countless people that I would have never met trusting their intimate stories of challenges with me. the list goes on. I still have those God moments when I ask the hard question like what will happen to her when I am gone? or will she marry? or will she want to live on her own. So much ahead and we've come so far, but for now I'm enjoying the tiny miracles along the way and continuing to pave the road day after day.
Miracles.. From the heart of a special needs Mom
