DEAR STELLA…. (By: Aimee Bruner)
I want you to know that I dreamed of you long before I ever met you. I remember standing in the doorway of the room we made for you and daydreaming. I just stood there, sometimes for the better part of an hour, staring at each piece of furniture, and envisioning you lying in your crib or rocking in the little chair with an oversized book in your lap. I wanted to meet you so badly it hurt. Tears brimmed in my eyes as I cradled your tiny head in my hands when you made your way into the universe. I was there. Clutching you like a football made of glass, I held you tightly against my chest as I walked the hospital halls with you into the wee hours of your first night on earth.
I remember loving your hair and hoping that it would stay strawberry blond (with a hint of red) all your life. I remember making up a silly song for you all about each one of your features and singing it over and over again while changing your diaper or giving you a bath. I remember the first bath your mama and I ever gave you. We put the baby bathtub on our kitchen counter so that everyone in the house could see you. You didn’t even cry. Instead, you just stared up at us with your sea blue eyes, kicking your feet. I will never forget that.
I want you to know that I miss kissing you through the fence at daycare during our morning drop offs and that my heart breaks when I think of the few times I picked you up at the end of the day. I will never forget waiting for you to notice that I was there. You were always sitting with the rest of the kids on the mat, listening to one of the staff read a story. Your head would somehow know to turn around and when it did, the biggest, toothy smile would appear on your beautiful face. This was always followed by a “MOMMMMMYYYYYY!!!!” and a hug that I wished would last way longer than it ever did. I will forever wish that I came to pick you up more often when I had the chance and I will try to do better with your brothers.
I want you to know that when I hold you in my arms I just want to pull you right inside me and keep you there until the immense hole in my heart feels full again. I miss you already and you’re not even gone. When we sit on the couch together I love holding your hand. I tell myself that you’re squeezing back even though I know that’s not true. The reality is that the tumour in your brain is causing the pressure in your head to build and push down on the area that’s in charge of moving your fingers, causing them to stay locked like that. These days it seems like the more I take advantage of the incredible opportunity your “bounce back” has given us, the more we “live” as a family – the more my heart breaks in the face to true gratitude for this “extra” time we’ve been given with you. I want you to know how much you’ve taught me in your short life. I now know what to do with all the love I have inside me. I know what it truly means to be “in the moment” and I know how I want to live my life. I thought I already knew all of this but watching you (for more than a year now) adapt to each and every unfair, horrible and complex reality that DIPG has thrown your way, has left me in complete and utter awe of you.
When you started to become unsteady on your feet – you said “mama carry me.”
When you couldn’t walk anymore – you told us where you wanted to go.
When you couldn’t feed yourself – you said “mama I hungry”.
When you couldn’t use your potty anymore, – you played along with us as we put your “big girl underwear” over your diaper.
When you lost control of your arms – you learned to dance with your head. When DIPG took that from you too – you learned to dance with your eyes.
When you lost your ability to speak – you not only learned to stick out your tongue to communicate “yes”, you also decided that leaving your tongue out for more than a few seconds also means that you want your bottle. You taught us that.
You taught yourself how to paint with your teeth and you taught your mommies that you CAN still participate in everything in your own way. You reminded us that you still WANT to participate in everything.
You taught me about what the word “comfort” really means.
You’re so funny. You’ve always been funny, right from the beginning. I truly “get” your inappropriate sense of humor. You’ve had inside jokes with people since you could barely walk and that puts you in a league of your own….well, that, and the fact that you find humor in other people’s pain. I love that about you.
I want you to know how much I adore your laugh. Lately, I often find myself sitting on our couch (long after you’ve fallen asleep on my lap) and watching videos of you from our “old life”, just so I can hear your voice. It breaks my heart but I need to hear it. I remember how you used to say each and every word and I miss the sound of your voice desperately. You talk to me with your eyes now and I love that too but I want more.
I want to keep you.
I want you to know how incredible I think you are. You and your brothers are (with a little help from your Mama), my greatest accomplishment and the very best part of my life.
I need you to know how much I love you. Your smile will be forever etched on the walls of my heart and I will carry you inside me forever.