When our older daughter, Sadie, turned 1, we had all of her Aunts, Uncles, grandparents, and cousins write her a little note to be read on her 18th birthday. Her Dad and I wrote a note as well. I spent a while writing it as I wanted to capture all of my thoughts about her first year and all of the hopes I had for her future. I imagine this little time capsule we created will bring lots of joy and fun memories.
For Brooks’ first birthday, I didn’t hesitate to request the same notes to be written and stored for him to read on his 18th birthday, even though in the back of my mind, I knew most SMARD kids do not make it to their 18th birthday. I pushed those thoughts aside and collected the notes anyways. The thought of writing his note from me, however, was daunting. Here we are on his 2nd birthday and I never wrote it. So here it goes, my letter to 2-year-old Brooks to be read on his 18th birthday.
Brooks, my sweet boy. You. Are. Amazing.
I love and admire your determination. SMARD throws you challenges, but you adapt. You use the strengths you have to overcome all obstacles. You work so hard to move. You love all the hard stuff, like pushups and squats. Even when you’re tired, you give it everything you’ve got.
You inspire me and so many people around you just by being you. So often we look for inspiration from the extraordinary, but sometimes the real magic is in the ordinary, everyday stuff.
You are funny and you love making people laugh. I can’t wait to see you with your friends and the way their lives will be changed because of you.
Don’t ever let anyone say you can’t. You will find a way to do anything you want to do, even if it’s done a little differently than anyone expects. Embrace the unexpected.
I’ve never met anyone who smiles with their eyes the way you do. Your little personality is magnetic. Our nurses gush at the way you look at me. I think you pack all of the love you would normally express with words, hugs and kisses into your smiles. We should all look at and love each other that way.
I love watching you and your sister together. It’s funny us parents have these plans for life and what our kids will do. SMARD was not in our plans. But kids don’t have plans. You just love life and you love each other. Sadie will forever be in your corner, fighting for you and helping you conquer the world. You both have shown us purpose and perspective. We value every moment we have together as a family.
I pray you know that you are perfect just the way you are. Yes our life is different than your friends. Yes, we might get tired or frustrated, but that is NOT because of who you are. You are beautifully and wonderfully made.
There are days I wish we could do things the way everyone else does. I want to scoop you up and feel your arms wrap around my neck. I want to tickle you and hear your giggles. I want to take you on a trip without so much planning, or even just to the grocery store to pick up dinner and a treat for you.
I wish my mind could erase the memories of the moments when we almost lost you. I wish there weren’t so many of those moments and I am believing with my whole heart that we won’t have any more of those moments. I am believing gene therapy will change the outcome of your disease for you and many others.
I cannot wait to see all of the things you accomplish on your way to your 18th birthday. You have packed so much into your first two years. I know God has big plans for you. This life is not what we expected. You and Sadie have made it so much better.
Happy birthday, Bubs. We love you.