Today my oldest son turns 15. This is a milestone for most kids. But for my Matthew, this is so much more. Some of you know his story, but for those of you who do not let me give you a brief history. Matthew was born missing half is heart, a condition called Hypoplastic Left Heart Syndrome. A word that when I first heard I could not even say. The doctor wrote it down on a piece of paper for me, with a rough sketch of what a normal heart looked like and what his looked like instead. I held that paper and just cried, the tears would not stop. He looked so perfect, how could he be so broken?
I did not know anything was wrong with him, till a few hours after he was born. One of the first miracles in Matthew’s journey is the fact that his pediatrician noticed the small signs that something was not right with him and pursued further testing. The pediatric cardiologist happened to be in the hospital that day too. She normally only came to our small town hospital once a month, but she was there that day. The two of them together discovered that Matthew had one of the worst heart defects, he was literally missing half his heart. Sadly the only other person I had ever know with this condition was our pediatricians daughter, she has passed at 3 weeks old about a year before.
We were given three options. We could choose compassionate care, which meant we would hold him and love him until he passed away. This option would leave him free from any needles, tubes or surgery. Second option was heart transplant. He would be intubated and in the hospital, but most likely he would pass away before a heart would come available for him. Third option was surgery. A series of at least three open heart surgery’s where they would try to reroute the heart, they gave him about a 30% chance of making it through the first surgery.
As I sat on my hospital bed holding this piece of paper, trying to make sense of it all I felt hopeless. I was suppose to be picking out what outfit to put him in to take him home. Instead I was trying to decide if he was going to die today, or possibly on an operating table. As I looked at my baby, I could not imagine putting him through all that pain. Plus I was paralyzed by fear and not knowing what was ahead. In my heart I thought maybe compassionate care was the best option. Just letting him pass without pain, and without struggle.
I looked at my husband… He had sat and listened to everything the doctors had told us together. When I heard it, it was all a blur. But my husband had heard every word, every detail. He had mapped out in his head how each surgery would go and what changes would be made to his heart. He understood the risk, he understood it was going to be a long journey… But he said we had to give him a shot. Our son had not given up yet, so how could we? He stood up from the side of the bed and said, ” I will sell everything I own, I will go wherever it takes… I will give my son a chance to live. If he dies on that operating table that is ok. I can live knowing that I gave my son every chance he had.”
He made the choice I was to scared to make, the choice to give our son a chance at life.
As I sit here today and think about our journey over the past 15 years, it has been a long hard road. There were days, nights and even weeks and that I wondered if life was ever going to feel normal? Would there ever be a day that I didn’t feel the need to count his heart rate, or watch to see how heavy he was breathing. Or would I ever be able to take the emergency bag out of my car, that was packed and ready for the next life flight trip? The first 4 years were the hardest, we lived in and out of hospitals in three different states. Matthew was very sick and ended up having over 14 surgeries. Some days I wondered if I really had what it took to be his Momma. But he has been worth every struggle, every tear, every heartache. He never gave up, so how could I?
Not a night goes by that I don’t check on him before I go to bed. I still place my hand on his chest to just feel his heart, and I kiss his forehead. I say a prayer in my heart, thanking my Father in Heaven for him and pleading with the Lord for another day. His journey has taught me that each day really is a gift.
Happy Birthday lil buddy… praying for another healthy year with you!