To the Moms of Kids With Disabilities, Your Voice Matters

Motherhood is uniquely experienced by all. No two mothers are the same and no two babies are the same. So understandably, we all go through a trying time as we figure out what is best for us in this phase of parenthood.

We receive unsolicited advice from what feels like every well-meaning acquaintance we’ve ever met. We are bombarded on social media with everything we should or should not be doing. We are surrounded by constant “tips” that for a first time mom, can be incredibly overwhelming.

Enter me…

As a first-time mother of a baby with disabilities, I questioned myself at every turn.

When she was first born and they told me she had a cleft palate and hearing loss, I almost immediately had a nervous breakdown in the hospital after they gave me a little brochure that stated that the absolute cause of clefts is unknown, but some contributing factors may be medications the mother took in pregnancy, stress in pregnancy, mother’s weight, etc.

Oh my gosh, those all apply! This is all my fault! I thought. They sent in a counselor to talk to me as I cried that I didn’t know how I was going to take care of her.

He asked me, “Are you going to love her?”

“Well of course,” I replied.

“Do you have a home prepared for her or is she going to live in a dresser drawer?” He questioned me.

“I have everything ready for her.” I said through tears, “I have been waiting for her my whole life.”

“Well then,” he said, “You will learn how to care for her the way she needs and you will love her and everything is going to be OK. I think you can do this.”

And I did. With great fear and trembling, I took this little person home and dove head first into therapies, specialists, surgeons, special feedings and medical grade equipment in the house.

I learned how to put one foot in front of the other each day and to be what she needed — even when all my strength was gone.

I had to find my voice as her mother, which was my greatest struggle the first two years of her life. I was surrounded by doctors and specialists who all thought they knew what she needed more than I did. As a first time mom in her 20s, it took a long time for me to realize that I know more than the professionals: I know her. My body grew her. My arms carry her. My heart aches with every little cry she utters. I know her every pattern, every sigh, every look.

I know how to advocate for her better than anyone. I learned to trust my gut feeling and be strong for her, when I needed to.

I discovered a protectiveness that I’ve never felt for anyone else.

I formed a bond that not a person on this Earth can hold a candle to.

I watch my heart walk outside my body everywhere she goes.

Being a mama is so heart wrenchingly beautiful. We have been given such an amazing intuition and we know our kids like no one else can.

There are enough relatives and random strangers out there to second guess us, so let’s not do it to ourselves.

I am not going to lie, by the time I had my second and third kids, I was like a dictator to anyone who tried to give me unsolicited advice, because I trusted myself this time. I vowed to not pick up another parenting book unless it really encouraged me and uplifted me. I unsubscribed to all the, “What your baby should be doing every flipping week” e-mails, because they were stressful! I stopped asking everyone else what they thought I should do and started to ask myself what was right for my children.

Find your voice, Mama.

Trust yourself.

Give yourself grace for not knowing what you didn’t know before. Arm yourself with knowledge.

Free yourself from the opinions of others.

As long as I know I did my absolute best and my children know they are utterly loved, when my head hits the pillow each night, I can sleep in peace. Sleep tight mommies — for however many hours it will be till your kiddos crawl in bed to find their safe place in your arms.