So who is Nathan? He’s an angel. He’s our miracle. He’s a stubborn headed kid that fights everything. He smacks his spoon across the room during meals, he purposely chokes on the meds we give him and spits them out. He learned to throw up in the middle of the night just to get our attention. If I block his path in the hallway, he’ll try to go around me and bonk his head into my legs for 20 minutes until I finally give up and let him go through. He kicks his legs, squirms all over, and fights me with everything he has every time I change his poopy diapers. When we’re in the hospital he’s the kid that extubates himself and rips the IV out of his arm the moment the nurse turns their back. After spending the first year of his life on his back he’s learned to hold books open, play with toys, and do just about everything with his feet. His first word wasn’t mommy or daddy, it was “book”. He puts his head forward whenever I see him, his universal sign for please headbutt me daddy. We lay on the floor and he screams and I scream back, that’s how we communicate with each other. He let’s me rock him in my recliner at the end of the night for half an hour before bed but never at any other time of the day. With every ounce of his being he is a fighter. Thank God, he needs to be. He’s my second son, my baby boy with Ebstein’s Anomaly, and I love him with everything I am.
We won’t be at the walk this year because Nathan will be in Minnesota having his 6th open heart surgery. He’s 17 months old. It’s amazing what we’ll go through to make sure our heart kids get a shot at life. It’s worth all the pain, all the tears, and a lifetime of worrying just to see them smile and hear them laugh. His laugh is so infectious it lights up the entire room. Three times now I’ve had to watch Nathan go through drug withdrawals, indescribable pain, and fear. He’s trying so hard to catch up with the rest of the world and we’re here cheering him on at every single minor milestone he achieves. He finally learned to sit up shortly after his first birthday. He just started standing on his own. I’m so sad he has to face another setback.
Whenever he wakes up or goes to sleep he stares at the ceiling in his room. He’s always done it. My wife is convinced there’s an angel watching him at all times and that he can see them. I hope so. The only thing that keeps me going is knowing all the good that’s come from Nathan’s journey. We’ve raised over $6,000 in the past two years for this heart walk because of the friends and family that hear our story and are moved enough to help. We’ve had countless people reach out to us and tell us how much our story inspired them in different ways. So much good has come out of so much sadness. I hope our story and faith can continue to be a testimony to the world that God is real, he loves us, and he has a plan. With faith, even a broken child can move mountains or so they say. I don’t know what Nathan’s future will be. I hope he lives to be 100. Regardless of how this story ends, Nathan WILL have a positive impact on this world.
