Sight to See

 

 

When I returned to work after having my first child, a co-worker asked me how it was going, and I honestly said,“It’s a sweet time, but it’s areally hard time too. Med time feels impossible. Trying to get a newborn to take so much medicine twice a day feels impossible.” My coworker brushed off my response by saying,“oh my gosh! I know! My son has reflux and getting him to take his medicine is awful.”

 

That broke something between us. My coworker was comparing giving her son less than 1 ml a dose of meds for acid reflux, to me trying to give my child 30mls a dose to stop her seizing body. I had never felt so un-seen. So unheard.

 

I am the mother to a child with medical and special needs. Her genetics are a bit wonky and so she grows tumors without pause in her body. She has heart, eye, brain, kidney, and skin tumors. As she grows she will likely grow tumors in her lungs that will kill her. Genetics aren’t fair but they are what they are. And so we make the best of the life that we have with her, knowing it will never be fair, but aiming to live a REALLY GOOD life.  I am also the mother to two neurotypical, healthy children so I also understand that having neurotypical, healthy children isn’t exactly a walk in the park. Being a mom is hard. HARD.

 

Now I am sure my coworker meant no harm, but she wasn’t able to hold in tension that my hard and her hard were different. They are BOTH hard. But they aren’t the same.

 

A couple years later my daughter had brain surgery. A surgeon cut open the bones on her skull, and entered her brain to remove a tumor that was causing 90% of her seizures. It was a last-ditch effort after multiple failed meds to try to gain seizure control.  I don’t feel like I have to go into the fear and pain that surrounds your 17-month-old having brain surgery. I think all mothers and fathers can comprehend that reality.

 

A few months later my best friend’s daughter got tubes. My friend handled that situation beautifully, stating, “I’m scared, but I know it isn’t quite like brain surgery.” And the truth is, handing your child to any surgeon for any reason is SCARY. But she was correct, tubes aren’t like brain surgery. They are both scary, both hard, but they aren’t the same.

 

A few years after brain surgery, my daughter almost died of the common cold. She got a horrible pneumonia and it damn near killed her. But her life was spared. This experience has left a mark on us.  When my other two neuro-typical, healthy girls get a cold and a fever I am concerned. It SUCKS when your kids are sick. You sleep less, you worry more, and it’s HARD. But when my oldest gets sick, a new level of fear enters my heart. A fever shows up and I wonder, does she have pneumonia? Will this be the cold that takes her from us? I don’t think those things about my other children.

 

I didn’t fully understand these things until I had a child with special needs. I didn’t have this perspective until she was part of my reality.

 

When she was sick and dying, if my friends, or even people I knew had said, “Well, my kid is home with a cold, so what about them,” people would think those people were insane.

When she had brain surgery if someone commented saying, “My kid just got tubes. I get it,” people would roll their eyes, comment and suggest those things aren’t the same.

 

Yet, when we swap this story and involve the Black Lives Matter movement, white Americans feel it appropriate to say All lives matter.

 

OF COURSE THEY DO.

 

But that misses the point. It fails to hold perspective. It fails to hold the pain.

 

There are times when it is appropriate to hold in tension and with perspective what people are going through. There are times it is important to stand with people going through hard times. And NOW is one of those times.

 

 

 

 

3 thoughts on “Sight to See

  1. Beautifully written. Black lives do matter and I am ashamed of the white people that are trying to change the narrative to make themselves more comfortable.

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  2. Amen! You are an awesome writer. I can’t imagine all the fear you have had to face and you are raising your sisterhood. I love it. Looking forward to seeing them grow.

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  3. Love reading your blogs, friend. You are truly a strong mother. Thankfully for all your children, but mostly your oldest, you are a nurse and a strong advocate for her. I’m in awe with your family and all the ups and downs you’ve had and how your family handles each new endeavor. You are one hell of a strong woman.

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