When a Mother becomes a Caregiver

I did not sign up for this…Caregiving. 

The gtube feeds, pushing needles weekly into his stomach just to pump medication that should stop the infections, the suppression medication, the antibiotics, the steroids, the constant weekly appointments, the coordination of care and 13 specialists.

I did not expect the doctors to argue over who had the bigger problem. Only to call and say, “these are your options.” “If he has an episode, I want you to know what will happen?” “Which problem do you think needs to take priority?” 

The pain. The pressure. It pulsates through your veins and wedges its way into every part of your being making it impossible to escape.

It’s in the heaviness that creeps into your eyelids, the lump that becomes apparent every time you swallow, the pressure that sits in your chest or the knot that resides in your stomach.

No mother should have to live this life. But life doesn’t work that way. 

There is a huge sense of guilt writing and feeling these words. How can I feel such pain around the one person who bought me a new lease on life?

Maybe because it’s not a this or that situation. My life is magical because I am his mother, and my life holds enormous pain because I am his caregiver. 

It’s ok to be blessed beyond measure and it's ok to break down because it is all too much. This journey does not come with a guide.

Take a breath. Find your community. Learn to ask for help. We (mother-caregivers) may not have picked this but we will get through this. 

What I Didn't Know...

What I didn’t know is that I would have to bathe you every night as you smack and push away. 

What I didn’t know is that I would have to feed you through a hole in your stomach that I prayed your surgery team would never have to place. 

What I didn’t know is that I would juggle a million calls, doctors, pharmacies, paperwork and school meetings just to give you what you need.

 

What I didn’t know is that we would spend our time heading to therapy instead of the ball field with your friends.  

What I didn’t know is that it was on me to medicate you, so the fear of an unknown world won’t wash away your smile. 

What I didn’t know is that everything in this typical world would be so dangerous for you. 

What I didn’t know is that I would spend more time than I imagined watching you endure through physical pain while I pushed back my tears.  

What I didn’t know was that you would never say my name.  

In all the things I didn’t know I was able to learn everything I needed to know… 

What I learned is that in the worst of times it would be you that held me.  

What I learned is that our dances, laughs and cuddles created joy in the most simplistic ways.  

What I learned is that through your genuine, pure and raw love is where I feel safe and at peace. 

What I learned is that your strength and perseverance would bring out a fight in me I never knew existed.   

What I learned is without you I would have never become me 💗