Our Warrior's Battle Against CHD

Our Warrior's Battle Against CHD

Saturday, February 8, 2014

Heart Week

We have officially been heart parents for 18 months now. Or as a fellow heart mom wrote, survivors. Lincoln has been our little heart warrior without any understanding of the reality of his world. Part of me thinks it will be easier when he knows, but the rest of me is simply enjoying his oblivion, his innocence, his ignorance of his reality. He thinks his medicine is an apple sauce dessert every night where he gets to listen to birds squawk and a porcupine dance to the music. He tolerates his INR readings for a granola bar and milk. He handles his endless doctors' appointments like a true warrior- accept and overcome. He rocks his helmet like it's a hat. And he still wants to snuggle in our arms for protection and comfort. 

Linc has no idea that the last three heart appointments have been worrisome. He has no idea that dozens of specialists get together to discuss the best options for his heart. And he has no idea that his colds and stomach flu shouldn't be so hard on him. They should go away like they do so quickly for his brothers. He doesn't know that the four of us hold our breath when he goes up and down the stairs like the big boy that he wants to be. And he doesn't know that his mom cries for him because it isn't fair - that he has to endure more than all the rest of us combined. That he has to suffer through so much pain to survive. He is unaware of the sacrifices his brothers make to keep him safe and the double standards that have already begun to keep Linc safe. And he has no idea that he faces more surgeries in the future. 

Heart month celebrates his victories, our sacrifices, and his unknown future. We don't get to picture him as a successful adult yet. We live in the unknown, taking the victories and hurdles as they come. But we also know that our faith and our God has had his hands on Lincoln's tiny heart. And ultimately, it is His plan for Lincoln that will unfold. We are simply watching and enjoying the canvas He is painting. Lincoln is the most determined, funny, sweet, stubborn boy I have. He loves to dance, laugh, talk, eat, drink, and play with his brothers. He doesn't mind his INR pokes, but hates having his face cleaned. He is so extraordinary in that all he has faced -- he hasn't been "behind" a milestone since six months, which was not what anyone predicted. He is a blessing beyond words and understanding. 

This year, during heart month, we are celebrating the journey Lincoln and our family have endured thus far. And we are thankful for those to have helped us along, lifted us up in prayer, and celebrated the miracle he is. We are thankful for our heart community who helps us to realize that we have support out there. I am incredibly thankful for his heart team- cardiologists, surgeons, nurses, our pediatrician, anesthesiologists, ultrasound technicians, and Jodie, his VIP nurse. We love them all like family. They are all heroes in our household.  

To all the heart moms and dads out there, we praise you, we sympathize with you, we cry with you, and we cherish you. We are all plowing the streets for future babies with mended hearts. It is the most common birth defect in babies. So, if you want to celebrate Lincoln, the heart warriors, and heart angels this week, please wear red for them. Xoxo

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