You’re right, you’ll lose everything you think is important. Your dream job, your savings, your sanity. And all those things you’re worried about happening…strokes, oral aversions, g-tubes, learning disabilities—those will all happen, too. You are not being a pessimist; you’re preparing. There is nothing you can do to stop these things from happening, so just trust that God’s got this. It will be hard. Really hard. You will lie in bed at night, your brain creating escape paths in order for you to cope. Becoming homeless on a Florida beach will sound good. So will succumbing to smoke inhalation if your house catches fire. You’re not crazy. You’re surviving. Let yourself be mad and sad. It’s okay to mourn the loss of normal. The loss of easy. Many people will tell you it gets easier…well, yes, you will one day sleep through the night…in 3 ½ years. But really, it doesn’t get easier, the thing that’s hard just changes. And repeat this mantra when comparing yourself, and Hudson, to others: Your journey is not their journey. This will help when you are envious of other’s successes, and ease the pain of the many deaths you will be a witness to.
But amongst all that pain and loss, know that there is so much beauty within it. There is so much love. This seems ludicrous now, but you’ll feel thankful that life steered you down this path. You’ll realize that while the rest of the world is becoming hyper-focused on worldly things and achievement, you will KNOW the greatest thing of all is love. I know you are just as scared right now that he will live as that he will die. That keeping him alive seems selfish and cruel with the promise of a perfect painless heaven ahead of him without all this medical intervention. But you should see him now. He’s living AND thriving. His life is good. He’s 6 1/2, adorable, and just radiates love and goodness. Everyday. All that you will lose, you will gain back in love; you will have everything that is actually important. You will learn that life is love shared, and nothing else. And your fears and sadness? They never go away. But you’ll find that, most days, you just get distracted by the goodness in all of it. So warrior on, sister. You were made for this.
Guest Post Written by Shannon Boyd – Shannon is the proud mother to Hudson Boyd. At 18 weeks gestation, Hudson was diagnosed with critical aortic stenosis, his parents told that he would likely die, and his best hope was with a surgery that wasn’t done in the state they lived in. Eventually diagnosed with a variant to hypoplastic left heart syndrome, he’s been in and out of the hospital for collectively nearly a year of his life, but is now thriving as a kindergartener. His mom, a pediatric occupational therapist, has spent the last 7 years trying to control the uncontrollable, and is slowly learning to let go and appreciate the ride.