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To the Mom Who Disagreed With My Medical Decisions for My Daughter

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Our conversation started out nicely enough. You contacted me because your son has the same disease as my daughter, just a different type. You liked something I had written and thanked me for writing it. I thought, for a moment, we could connect on this lonely road of parenting a terminally ill child.

When you started suggesting the type of care to give my daughter, I politely thanked you and let you know we were taking a different route. That’s when things took a turn.

It was clear right then that your choices differed from mine. That was fine. I thought we could keep talking. I was wrong. Instead of respecting the fact that I wasn’t interested in your input, you made suggestion after suggestion. You pushed and pushed. You told me my medical choices were wrong. You told me I was wrong. I read your messages in disbelief. I was absolutely shocked.

You questioned me as a mother. You assumed I didn’t research, agonize and pour every ounce of my love into the decisions my husband and I are making for our child.

You don’t know my daughter, me, my family or our story. You saw spinal muscular atrophy type 1 and decided you knew more than I did about my daughter. You assumed. You wouldn’t know that I’ve talked to countless parents who have made all different choices. That I’ve consulted with many doctors and specialists. I’ve traveled all the roads I can find to gain every bit of information.

What you should know is there is no competition. You aren’t better than me, and I’m not better than you. Each child and person is unique and so is each family. There is no right way to do things across the board. You will not shame or shock me into changing my mind. Would I be able to change yours? I doubt it. I wouldn’t attempt to because you know your child better than anyone else.

When you disagreed, you could’ve said, “We chose something different for our son. If you’re interested in hearing more about, I’m happy to talk any time.”

Be kind. Please don’t push yourself and your beliefs onto someone else. Have compassion and care for another mom going through something no mother should have to. Please remove your judgment. If you can’t do that, then please keep those judgments to yourself.

Your words were strong. They cut deep but they only hurt for a second. The love I have for my daughter and her best interests is much more powerful than your comments.

I hope next time you’ll see that you’re talking to another mom doing her very best. Just like you.


One Mom to Another

Follow this journey on Still Finding Sunshine.

Tell us about a stranger’s comment about your (or a loved one’s) disability, disease or mental illness that has stuck with you for one reason or another. Why has it remained significant to you? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

Originally published: June 16, 2016
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