Plans for Hope and a Future
Let me start by saying I don't believe God causes pain in our lives or that "He only gives us what we can handle." I think there is evil in the world and there are some things we just can't understand in this life. I do know that God has spent years preparing Cam and I for this exact moment in our lives.
I have not always been patient enough to be still and hear clearly from God but every major decision in my life has been very clear: choosing a college, a spouse, a job. Now I am seeing that God knew exactly who, what, and where I would need to be in this moment.
Some people might call it a coincidence, but at times things seem too perfectly orchestrated to be by chance. Every moment of weakness has been followed by great hope. Every person helping us along this journey seems to be hand-picked for us. God can use every situation, good or bad, to point people towards Him.
Most people probably see our story as all sad, so unlucky. Though I would take away Brooks's disease in a heartbeat if I could, it's hard to explain how much I love Brooks just the way he is. I am so proud of him, just like I am proud of our healthy 3-year-old Sadie. Brooks is legally disabled and medically fragile. I fully accept that but also cringe when I hear it because those words don't accurately describe our Brooks. Society wants to make those things WHO he is, but those are just physical descriptors.
Brooks is a Champ. He's a strong-willed fighter. He loves his family. He loves life, balloons, and Lightning McQueen. He likes holding Mom's hand and watching basketball with Dad. He laughs at fart noises and likes to pull his sister's hair. He brings joy to all who meet him.
Of course he's only 8-months-old, and he doesn't know another life, but my favorite thing about Brooks, the thing that makes me most proud, is that his external circumstances don't define him. He is disabled, but he is full of life and joy. He's just a baby but he's taught me so much about about life, love, and determination.
Eliminating his disability is not our goal as we fund raise for gene therapy. Our goal is LIFE for Brooks. SMARD is a life-limiting disease and constantly reminds us that tomorrow is not promised. Our hope is to give him a limitless future.