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When This Special Needs Mom Isn’t Feeling So Mighty

There are days when I struggle with my cape.

If I can be honest for a moment (without judgment), I want to make something very clear. I don’t believe there is anything special about the DNA of special needs parents. When I wake up in the morning I am tired, overwhelmed and in need of a few more hours of sleep — just like any other mother. When the sun is shining a little brighter, it is easier to get up, strap on my utility belt and take on the world. When life brings rain, lifting my legs over the side of the bed and planting my feet on the floor seems almost impossible. The thought of diapers and bottles and therapy and school and appointments and stretches and routines and pickups and drop offs — and working my nine to five — are enough to make me want to crawl right back under the covers and disappear.

And then I see my lovely son’s face, and I can’t wait to start another day with him.

Motherhood is a little different for moms like me, moms who start their journey in the NICU, praying next to incubators that their child will survive. We are immensely grateful, because of the miracles that grew out of that pain. We don’t want to seem unappreciative or weak; we don’t want to be pitied.

However, his premature birth was my premature birth; there is no separating the two. It took a toll on me. From my first day of being a mom and his first day of being a son, life has required us to fight. There was no grace period. And yes, that is pretty darn hard. It is hard and it hurts to watch your child have difficulty with things that other children are learning. It is my love for him that makes me want to always be “mighty,” and my love for him that often takes so much of me that I don’t feel mighty enough. That is a preemie mom’s great catch-22, and I am sure it is the same for his dad.

Four years have passed since I became a mother, and for three of those years I have also worked a full-time job. His dad and I have juggled and compromised and tried our best to give our best to our little boy. My best comes with the standard kisses and hugs, but it also includes stretches and speech sessions and siting on the floor encouraging him to sit unattended (we are currently working on his balance and ours).

My son Jharid was born 16 weeks early and spent five months in the NICU. He has cerebral palsy, is nonverbal and has developmental delays. My Jharid is also demanding, assertive and smart as a whip. Plus extremely cute and funny. I find great joy in him and in caring for him. Raising him has raised a new level of happiness and gratitude in me. Most days, I love it. I find my daily dose of perspective in our “to do” list. It thrills me to see him master new skills and discover new ways to move.

mom holding her smiling son in black and white photo
Kaleena and Jharid.

His progress is my purpose.

Then there are days, though few and far between, when the only thing mighty about me is the level of my tiredness, though I dare not communicate those feelings to the world.  Most certainly, there are days when he finds it hard to deal with me. He doesn’t always feel like wearing his cape, either. It is on those days that we leave the goals behind and focus on nothing. Those days are the best for the both of us. At some point, even the sun must set. Every now and then, moms and dads, we must take a moment for ourselves. We can’t save the world if we aren’t strong enough. You matter in a mighty way, too. Take care of you. It is absolutely OK to not feel mighty all the time, and to say it out loud. Even in those moments, you are still enough.

There are days when I struggle with my cape. And on those days, I don’t need someone to help me put it on. I need someone to tell me it’s OK to take the sucker off.

need someone to be mighty for me.

Follow this journey on Praying4MyPreemie.

The Mighty is asking the following: Write a love letter to another person with your disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.