5 Ways I Wish People Supported Me After My Child Was Diagnosed With a Rare Disorder


Twenty-three years ago, my daughter was diagnosed with Aicardi syndrome. As I tried to process all the information and implications, I also tried to help family and friends understand how to help us cope. I appreciated their
efforts and advice offered in good faith, yet none of it helped much. 

We did our best to navigate uncharted territory while still attempting to retain our lives as we were accustomed to. In retrospect, these are the five ways I wish people could have supported me after my daughter was diagnosed:

1. Help with the housework until I got my feet back under me. 

Laundry, vacuuming, dusting, floor mopping and caring for a house is very low on the priority list. At the same time, seeing these things left undone is a great source of stress.

Taking care of an infant with medical issues, a healthy 3-year-old and a spouse are about all I can handle. When the basic housework is left undone, I feel completely inadequate.

I’m learning words and procedures I don’t yet understand while trying to keep my family going. If you would just take over one task for one day, such as laundry, it would help a lot. Dropping off a meal that just needs reheating and some paper plates would keep us healthy and make the end of the day that much easier.

2. Listen to me.

When I voice my fears about the development of my baby, please don’t act as if I’m overreacting. I’m the one who has been talking to the doctors and doing research. When you tell me to “stop borrowing trouble,” it invalidates my feelings. It makes me feel more alone.

Please listen to me, hand me tissues, entertain my other child or make me a cup of tea, then remind me that only time will tell how well my child develops. Reassure me we will learn to cope with whatever comes along.

If I hold in all the inevitable negative thoughts, I won’t be able to find the positives. It would be a shame if I missed any of the good things because I was so focused on the negative ones.

3. Encourage me to step away for a few moments. 

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Learn how to care for my child and help me see that even just stepping outside by myself for 5 minutes will refresh me. I will be against this, but if nobody gets me to see that caring for myself is just as important as caring for my baby, I will burn out. Help me understand that even sitting with a cup of coffee for 10 minutes while someone else takes over will benefit us all. 

I need to learn that my way isn’t the only way and that my baby needs a break from me as well. We all need contact from more than one person in our lives. Eventually, I may be able to leave her in someone else’s care for an hour or two at a time. 

This will allow me to feel like myself instead of a nurse/therapist/teacher/doctor/researcher all wrapped up in one. I need to remember who I am in order to be the best person in whatever role is required of me at any given moment.

4. Please don’t give me the “You’re never given more than you can handle” or “She has the right mother” speech.

Really, I’m not that special. Every day people are taking care of their kids no matter what is required, and I am no different. My kid’s needs are just not as mainstream as most. It doesn’t make me super or strong. It just makes me a decent parent.

5. Be honest with me. 

If you feel uncomfortable around us, please try to figure out why. Maybe we can talk about it. Don’t just stop calling and coming around without explanation. I already feel like the odd one out, and when you drop out of my life, you are taking away the support I need while I’m trying to make sense of everything. 

This diagnosis changes the rhythm of our lives even more than simply having another child does, and we will all need to constantly adjust to new circumstances.

Imagine doing that while mourning the loss of someone’s presence in your life as well. I’m sorry if I don’t seem like much of a friend right now, but if I didn’t feel comfortable enough with you being cranky or crying, we wouldn’t be that close. Leave if you must, but please tell me you’re taking a break. If you can’t do it in person, at least send me a note so I’m not left wondering what I did wrong.

Helping any caregiver to cope may be one of the most important ways to support them. Don’t underestimate how much doing even one little thing for them will help. 

Caregivers need to know someone cares about them. If you ask them what they need and they don’t know, then look around. Chances are, you’ll be inspired to do something for them they didn’t even realize they wished someone else would do.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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