Eleven

Our girl is eleven.

It has been a year of change, for Elena, for me, for our whole family. With change comes hard transitions, tough realizations and constant shifting and triage of all our priorities. I have often written about one of my hard-stop rules of being a special needs parent– that is never, ever, think about, consider, ponder, plan out, or dream about the future. You keep that shit under a heavy veil and only take the slightest of peeks when absolutely necessary. This year has required me to lift the whole thing up, and stare long and hard into the misty haze. Leaning into all this change and what the next few years will look like has been an overwhelming, panicky at times, exercise for me. Lifting that veil has let in feelings I hadn’t felt for years, while juggling the decision-making, action-planning, and facing the realities of our family’s challenges.

Elena, my darling girl, has just been Elena. Yes, she’s bigger. Her face looks older, having lost most of it’s little-girlishness. Freckles still dot her nose. Her eyelashes continue to be the envy of women. Her blue eyes still shine with depth and inexplicable light. She still loves all the same things. Her last baby tooth just came out last week. Her body remains a constant battle for her, and for us. She endures without complaint the inconsistencies of us still adjusting and calibrating her Baclofen Pump, the increases in meds that leave her out of it for a few days. School is her favorite, where progress has been such a driver of hope for us this past year. I know summers are long and hard for her, missing that routine, the people, the constant stimulation. Elena’s body is a constant concern for us. It’s changing. It’s failings require constant vigilance. Elena’s needs are constantly changing, but she mostly remains the same. Which is really, what makes this so hard, what breaks my heart.

Unless you’ve experienced it, I can’t explain to you the pain of watching your child grow, but not change. We Moms are notoriously sentimental about watching our babies grow up, but damn, what a freaking privilege it is to watch this miracle unfold. The awe and the corresponding pain of this very miracle is present for me every single day, observing the stark differences in our family between our children, our boys on one trajectory and Elena, sweet, precious, Elena remaining on another. This heavy realization has always been in the back of my mind, but as our lives and needs shift this understanding, and all that encompasses it in our daily lives, all the logistics, all the expectations, has brought not only fear, but again, a swell of grief. Life is a continual series of upheaval, unanticipated change, and if anyone can anticipate how to cope when life throws it’s curveballs, it’s me. However, this time I’m not sure it’s the chaos of change that I’m fearing. Where in most aspects of life, the future remains completely unknown, in Elena’s case, lifting that veil allows for a clearer anticipation of her future. The grief comes from it not holding the same unknowns, the sheer possibilities, the dreams that Calvin’s or Turner’s does.

This isn’t my regular birthday celebratory blogpost, I realize. Indeed we are celebrating her! The gift of her life is never outweighed by the challenges in it. But to say the difficult parts of her journey, our journey are behind us isn’t realistic. There are times when this is more true than others. The truth of this past year is that it has been a a constant struggle to shift, to adapt, to anticipate the needs of her and balance it all within our own and the needs of our family. Reaching eleven, all of us intact, all of us together, fighting for her, navigating the overwhelming challenges she faces, that our family faces is celebrated.

Our girl. Our Laney Lou. Our road, paved by grief and heartbreak, is lined with joy and love and gratitude always. Always.

Happy Birthday to Our Shining Light, Elena Catherine. We will get through this together, darling girl. We always have. All our love.