I have tremendous friends.
I do.
They are generous, encouraging, and life giving.
They are willing to overlook how many times I have to do a rain check for dinner plans. They send me memes on the daily, make me laugh til I pee my pants and absolutely are the difference between me completely losing it, and me just kinda losing it.
Related: 6 Easy Ways to Support Your Friend with a Disabled Child
They love me well.
But the truth is, they have absolutely no idea what it’s like to raise a child with a disability.
My daughter was born with a chronic heart condition that has required three heart surgeries (two of which were open heart). She also has several skeletal abnormalities along with being a lower limb amputee. She walks with the assistance of a very snazzy rainbow leopard print prosthetic running blade.
As my daughter gets older, the more I realize I have been clinging to the idea that I will still have a “normal” experience of motherhood. I have been reassuring myself for years that no matter how tough things are, I still will have the chance to experience motherhood the way my friends do.
That I will have a child who no one stares at when she walks into a room.
That I will have a child who doesn’t get tired more easily than other kids.
That I will have a child who doesn’t have to have things modified, adapted or adjusted for her just to be able to participate.
But I’ve learned more and more, this is just simply not my reality. I still to this day, am mourning the loss of motherhood as I hoped it might be.
Please know I 100% realize this sounds a bit self-absorbed.
I realize it’s horrible to be whining about my lack of a normal motherhood when my baby girl struggles just to make it through the day sometimes.
But in all honesty, sometimes I see my friends’ children and feel a pang of envy.
I leave every function a little sad that they all are going home to children that are able to move freely around the world. That don’t have mobility issues. That aren’t living in a world that’s not built for them.
I feel a deep, almost visceral sense of loneliness when I hear other mamas talking about their children — their struggles, their classes at school, their crushes, their vacation activities, their hobbies, their sports, their birthday parties, their lives.
It makes the differences between us feel more apparent.
The world tells you that grief gets less over time, but I think grief is a lifelong process. It’s layers and layers of love, pain, disappointments, heartaches, dreams, hopes, and sadness.
On my worst days, my grief stricken heart feels so broken I can barely breathe.
On my best days, my grief stricken heart feels so broken I can barely breathe.
The only difference between the two, my best and my worst day, is mindset. It’s how I respond to the loneliness that inherently comes with the circumstances our family is facing.
At my worst, I am focused on all the differences, on all the seemingly unfair, on all of the heartaches, on all the things I might be able to do to “fix” our lives. The grief can drown me….
At my best, I am encouraged by all of you. I am aware that no matter what my motherhood journey looks like, I am not alone in this. I am aware that so many of us tell the same tales, feel the same feelings, hurt the same hurt, and pray the same prayers. The grief could drown me……
Or I can remind myself I taught myself how to swim. I can remind myself that I’ve gotten stronger. I have gotten better equipped at carrying the weight of the grief. I’ve learned new skills to adjust my balance so I can somewhat function in life as I carry the weight of this substantial loss. Balancing, adjusting, and navigating life with it.
Being a mother of a child with a disability is lonely work, for sure.
But it is also the most inspiring work. It is work that matters. This work allows me to celebrate progress with absolute abandon because every single victory matters. It gracefully brings me closer to mamas that I will never get the opportunity to meet in person but make connections with every day online.
Motherhood brings out the absolute worst in me.
Motherhood also brings out the best in me.
It’s true for all of us I think. We are more alike than we are different, us mamas.
And this is the balm, antidote, and cure to my loneliness — because we all hurt when our babies hurt. We all dream of a bright future for our children. We all hope. We all struggle. We all grieve. We all rejoice. We all triumph.
We all want to throw in the towel sometimes. We all love with every golden fiber of our being.
Disability or not, a mama is a mama.
I am forever grateful to be in such good company.
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