Raising children is not easy. Caring for a child with medical needs or physical and intellectual disabilities adds to the challenges. The disease or disability can often take a family hostage, or at least that is how it feels. Your time is not your own. Your needs get kicked down the road. Sometimes they travel so far down the road, you can’t see them or remember what they looked like. Family and friends may want to help, but they do not know how. They wait to be asked for help. The reality is most families are not going to reach out. Most families will not share their struggles. Sometimes, we may not even know what we need.
Effie Parks, podcast host, and rare disease advocate, created an infographic about ways to support families in the rare disease community. The infographic outlines four specific areas and a list of suggestions in each one that family and friends can choose to act on. Here are the four categories and suggestions Effie received from talking to parents in the the rare disease community.
AT HOME
- Leave a meal at the door
- Plant flowers in my flower pots
- Fold laundry
- Put away supplies
- Grocery shop
- Take my car for a wash
TO SUPPORT
- Sleep over for a night
- Come to my house and send me on a walk
- Get to know my child
- Come sit with me during a procedure
- Bring me lunch at the hospital
- Bring over yoga mats and stretch with me
ACTIVATE
- Ask for books & podcasts that learn more
- Talk about rare diseases and disabilities to educate others
- Volunteer & engage at my events
- Be a point person during hospital stays & home
HANG IN
- Continue to invite me
- Understand I am living in crisis mode
- Check in regularly-send a text and be okay without a response
- Pick me up and take me to the movies
- Treat me the way you did before
I love all of these and wanted to add a few more that our family thought about:
- Take the dog for a walk
- If you see weeds in the yard, pull them
- Mow the lawn
- Drop off a cup of coffee or tea
- Come visit knowing the house will be loud, messy, and chaotic
- Offer to pick up prescriptions
- Donate to causes that support our family
- Offer to stay with our child in one room while we take a shower, nap, or get some fresh air
- Invite us again, even if we have always said no. It feels good to be included
Recently, Todd and I were able to go to Las Vegas for the weekend to celebrate 30 years of marriage. It took a village to care for Emily while we were away and I am thankful to friends who let me put them down on the I.C.E list for Emily and Justin. I also want to give a shout-out to my dear friend Julie who went above and beyond. She stalked us via text to get our dinner plans. She called the restaurant we were at in Las Vegas and attempted to pay for our meal. Her mission was unsuccessful, probably because she may have oversold us to the staff. She asked them to find the beautiful short woman having dinner with a sexy Papa Smurf. When the hostess had no idea who Papa Smurf, Julie asked to speak to someone over forty. It sort of went downhill from there. She and her husband were resigned to send us a gift via Venmo to cover the meal, but we had a great laugh about the experience. Todd and I will not forget her taking the time to show up for us.
Most of the time, just knowing someone wants to help and is in our corner is enough. Just being there and actively showing up is more than enough. Often a simple cup of coffee and five minutes of connecting with someone outside of the house is all we need to feel connected.
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Conversation for Change 