I often think back to the moment Curren was born, a 9 lb pink and cooing healthy baby. I remember the rush of relief when I saw his 10 fingers and 10 toes, his plump and beautiful face, and his perfectly round head. “Congratulations, he is healthy and normal” they said! I think back to the first few months of his life and how blissful and perfect it all felt. Curren was a happy, laid back baby who slept great and loved to snuggle; life was fantastic. My mind often went to dreams of the future. I saw visions of Curren chasing Weston in the backyard, of them darting out of their beds on Christmas morning to see their presents, of boogie boarding together at the beach, of the boys coming to our house at the holidays with their children/my grandchildren. It is heavy and devastating to give up on those picturesque visions. My grief is not in the mourning of a death, but sorrow for the devastation that has shattered my dreams. I am grieving the child that I lost, but that I still have.
What does my grief look like? It is the embarrassment after bystanders wanted to call 911 on my child who was having a sensory meltdown at the crowded reading of The Polar Express at Barnes and Noble. It is the shame felt watching someone ask Curren to clap or crawl for them like he is a dog being asked to perform on command. It is the pain left after a stranger questioned what was wrong with his legs on the first day out in his wheelchair. It is the desperation I feel after working a full time job and knowing I am coming home to another full time job of carrying, wiping, hand feeding, soothing, holding, teaching, loving, case managing, applying, appealing, and researching – all which may be necessary for decades longer or until my body can no longer do it. It is the anger burning inside in knowing that my son has important things to say, but that we have not yet found a way to make it so we understand him. It is the stinging sadness I swallow when parents complain about how they wished their child wouldn’t talk so much or how exhausted they are chasing after their baby who can now walk. But mostly, it is the guilt following the acknowledgement of embarrassment, shame, pain, desperation, anger or sadness.
Don’t mistake my grief for negativity. In fact, I feel more optimistic that ever about the future. My intense love and pride for my child is not in question, but the disability that has shattered my dreams is always stinging. The grieving never ends – there are no stages or moving on. I am, however, blessed to accept and embrace grief. Ironically, grief and hope seem to have a direct relationship for me. My grief inspires our journey, and it is the reason we do the things we do.
How do I stay hopeful and optimistic? I honestly don’t stray too far from the present. Life is precious, and what we have today, we may not tomorrow – and even if it’s not what we first dreamed of, it is still a tremendous gift. Curren is not able to chase Weston, but that doesn’t mean they don’t play in other beautiful ways. The excitement of Santa’s presents still happens, we’re just not barreling down the hallway on our own to see what is in the living room. We go the beach and have a blast (although it is exhausting). We work hard on the things that keep this grief burning, and will one day walk and communicate important things. My dreams are still here, they are just a variation of my first vision. The common theme to it all was laughter, happiness, and joy – and we definitely have that. Life is unexpected, unplanned, and beautiful.
My sister asked me for recent pictures of my boys the other night for a project she's doing, and I came to an awful realization - while I have hundreds of recent cute pictures of Curren, I have less than a handful of Weston. Granted he is in the funny-face phase of photo taking right now and I don't get many good photo opportunities with him, but it got me thinking about how much Weston's life has changed since Curren was born,
I remember being pregnant with Curren and wondering how in the world was I going to have enough love for two children? I already loved Weston with all my heart, and how would I be able to split that in half and make it enough? And somehow it happens - your heart grows and grows, and holds an insane amount of love for your little munchkins. I love my boys equally, but unfortunately I don't get to spend equal time and effort with them. Because Curren doesn't have abilities equal to his brother, it is the unfortunate reality.
I know that it's tough to be a sibling of a child with special needs, but it's also incredibly rewarding. Weston has learned to be caring, compassionate, and patient at a very young age. He sees our family make sacrifices and provide constant dedication to help Curren be his personal best, and that determination becomes ingrained in him. He has formed a special bond with his brother that no other person has, and will always be significant and influential to Curren. Weston has loved his brother from the moment he laid eyes on him in the hospital, where his destiny was determined. He has an important role, he will love and care for his brother over the coarse of his entire lifetime.
To my first son, Weston, I want you to know how much you mean to our family. You are Curren's biggest cheerleader. You are so sweet and thoughtful every day, whether it's trying to make Curren laugh, giving him kisses, bringing him toys he can't reach, racing in to his room in the morning to catch him sleeping before he wakes up, or just being the fabulous big brother that you are. We are blessed to have such an incredible soul, and to call you ours.
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I am a mother, architect, wife, and a lover (not a fighter) - with a thirst for knowledge. My journey been recently refocused, as my family navigates through the world of medical and developmental uncertainty in hopes of providing every opportunity for my son to be his personal best in life.