One day last year as I scrolled through Facebook and viewed image after image of smiling 5-year-olds in their adorable caps and gowns, proudly displaying their diplomas, I felt it. It was familiar, but not so much as it once was. The pit formed in my stomach, my eyes welled a bit, and I suppressed a tinge of jealousy. Ebb and flow, ebb and flow. The feelings washed over me. You see, I have a 6-year-old daughter with complex disabilities. She did not get to have a Pre-Kindergarten graduation like the children of my friends and acquaintances as she’d been in a special school since she was three.
The moment she entered this world, a tidal wave of emotions formed. Overwhelming elation, fear, sadness, surprise, pride (you name it, I felt it) crashed all at once in my heart. She was not the baby I expected, yet she was perfect to me. I loved her immediately and fiercely. She was not born well and rather than enjoy our first day bonding together as mother and daughter, she was whisked off to the NICU while a nurse kindly suggested I take a valium as an alternative to continuing to wail through the night. Merciful sleep soon enveloped me. My sweet girl is a fighter and after 10 days, I was swept up in joy when they told me she could come home.
The joy was short-lived as medical issue after medical issue, developmental delay after developmental delay revealed themselves. My world was a blur of therapists, hospitals, specialists and googling late into every night trying to understand “Why my baby?” The sadness and fear once again threatened to overtake me. It felt as if I were gasping for air only to suck water into my lungs. Grief is suffocating like that, and I did grieve the child I thought I would have as well as the mother I thought I would be nearly on a daily basis.
Time marched on as time will do and, little by little, I embraced my new normal. In my life, the inchstones are cause for massive celebration and there is an abundance of happiness in the small things. The milestones, though, contain glorious feelings I wasn’t aware I could achieve. I saw my 6-year-old walk for the first time this year and I don’t think words can capture the height of emotion I felt. Months later the novelty of seeing her upright hasn’t worn off. These moments could never be appreciated as they are were it not for the other side of the emotional see-saw that I’ve lived through.
I am now able to attend the birthday parties of her peers, laugh along as they learn to tell real jokes, and watch them interact with one another without feeling like my heart will split open. However, I still get that sting from time to time for one reason or another. It may be a Facebook feed full of Pre-K graduation photos, seeing a girl her age take off on her bike for the first time, have her first real boyfriend or be accepted into college. When you have a child who is not developmentally typical, I think there will always be a layer of grief somewhere below the surface. It gets buried deeper and deeper below as the years go by, your child grows, develops and has accomplishments, and you come to terms with your new normal. Every once in a while, though, that sting of grief will surface when your child experiences a struggle that other kids don’t.
All of these moments are worth it because I get to be her mom.