The 'Brave Face' I Wear as a Mama to a Child With a Disability

As a mother to a child with a disability, there are some days where the simple task of getting out of our pajamas and into some real clothes seems to be an impossible task. Between all the schedules — be it feeding, medication, therapy or medical appointments — I personally find self-care frequently tends to fall to the wayside. If I do manage to pull on some clothes and throw my hair into a messy ponytail, it will have been a momentous achievement.

There is, however, one thing as a mama to a child with a disability I wear on a daily basis — my brave face. Sometimes I don’t even realize I have the mask on. Yet, there are also many occasions where the mask feels like the most noticeable piece of attire I have on. Looking back on my journey thus far with Hayden, there have been notable times that I can recall wearing it.

The time where my doctor told me she had stopped growing inside of me, that her heart rate was falling rapidly and we had to get her out immediately or there was a chance she might not make it.

The time where we were told she was and will always live with a disability. And that because she was born different, she would come to face some very difficult challenges and her future would be limited.

The time where she got sick and quickly began to deteriorate before my eyes. An air lift had to be called and a paramedic told me she was too unstable to transport. He then told me we had to just pray and run as fast as we could to that helicopter if she had any chance at pulling through.

The time where she began having multiple, uncontrollable seizures every day and had to stay for months in the PICU. We had began to lose hope as we saw her slowly fade before our eyes and the doctors began preparing us for a different future.

In these types of moments, the mask is the brave face I wear. Without it I honestly don’t think I could have survived thus far in my journey as a mama to a child with a disability. In these moments I try desperately in vain to keep this mask on my face. I hold on just long enough so no one will see when I rip it off in pain, as the mere sensation of it being on becomes too unbearable to withstand. I feel if anyone were to see me without it, in some way it would make me feel like I’m failing.

I know you have probably been told it’s OK to let go sometimes, but you and I both know it is certainly easier said than done when you have a child with a disability. I want you to know removing the mask does not and will never make you a failure. If you are like me, you are a mama carrying an immense load and sometimes you need to pause and catch your breath. It is necessary to have the energy to keep moving. It doesn’t mean its easy though.

There are moments, however, that will help ease the burden of this brave face… moments that will make you forget it’s even on. The moment when your child meets a milestone that always seemed impossible. When you get to see a glimpse of their true colors shining through the overwhelming appointments. When they give you a sign that lets you know that they got this. When you get to witness in awe their incredible strength, and you wonder just how you could’ve been given someone so remarkable.

These are the moments that are the reasons why you are the furthest thing from a failure. You are the reason your child chooses to continue to fight, to continue to live. For you are your child’s person. You are their protector, their safety net, their best friend, their cheerleader and their number one fan. You are your child’s motivation to keep going. They fight for you, just as you fight for them.

I want you to know you are not alone in this journey. I want you to know I see you wearing your brave face. When I look at you, I want you to know I see an incredible Mama Bear to an incredible child. I have nothing but pure admiration for you. You are absolutely inspirational. Be proud of your brave face.