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Posted on 12. December 2012

Here’s How You Can Help

By Denna McGrew

 At least once per week, someone asks me, “What can I do to help?” You see, both of my children have complex medical problems, and together, they have spent hundreds of days and nights in various hospitals from New York to New Orleans. My “zebra” is 11-year-old Ethan who has CVID; my 6-year-old Jenna has lymphatic malformation.

Usually the conversation goes like this:

Friend: “Sorry that you guys are having a hard time (again). What can I do to help?” Me (while silently running through the list of things that would be helpful but not wanting to admit weakness): “Um, I don’t know. Thanks for asking.”

This scenario plays out time after time, and rarely does anyone outside of the immediate family actually end up helping. I’ve thought a lot about this phenomenon: Clearly, my friends want to help, but they don’t know how to make it happen. It seems easier for loved ones to rally around an acute and time-limited problem, but harder to wrap their arms around the fact that chronic illness is the family’s reality every day.

That’s why I wrote this on behalf of all of us who are stressed out, worn out and maxed out! Here are some things that friends and family can easily do to make a difference:

  1. Provide respite: What that means is to take the kids so that the parents can have a break and focus on protecting their marriage. Call and ask if you can take the kids on a specific day at a specific time. Tell the parents that you have a great activity that the kids would love. This eliminates the ever-present parental guilt.  

  2. Take the sibling(s): Take the non-sick sibling on a special outing. It is hard to watch your brother/sister suffer day after day. Give these kids a fun break and some special time too.

  3. Buy groceries: Call and say, “I’m headed to the grocery store. What can I pick up for you?” Then drop off the requested items, and don’t stay. Don’t make the family feel that they need to entertain you.

  4. Make dinner: Call and say, “I’m making lasagna for dinner. I would love to make two pans and drop one off at your house.” Follow the drop-off protocol described above.

  5. Provide funding: Prior to an out-of-town medical trip, anonymously give the family a gift card for gas, hotel costs and food. Most families with special needs children spend a shockingly large percentage of their income on quality medical care and access to specialists, prescriptions and special educational needs.

  6. Do yard work: Show up and start mowing!

  7. Tutor/help with homework: Sick kids get behind in school. Offer to come by and help with homework while the parent goes for a coffee break.

  8. Be a friend: Don’t let the fear of the family’s pain scare you away. Be a friend who sticks around. Be a friend who replies to emails and text messages when the family uses precious emotional energy to reach out. Be an encourager.

I would be remiss if I didn’t mention the one major don’t. Don’t judge the medication and treatment choices made by the parents. Unless you’ve had a child with a chronic illness, you really don’t know what it is like — it is not like your healthy child's broken arm.

I challenge you to reach out and provide encouragement to a parent of a special needs child. Your one gesture could be the thing that keeps a family together and moving forward for the sake of their child.

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Comments (1) -

Linda Thornrose
5:37 PM on Friday, December 14, 2012

I love this...it gives me a point of reference.  I would like some suggestions to offer those who want to help for us adults who suffer CVID (and in my case, fibromyalgia, chronic fatigue syndrome, and osteoarthritis causing chronic pain).  I also have an 83 year old mother who suffers from a progressive dementia that has worsened over the past year and I get pretty exhausted and overwhelmed at times.  Your ideas about offering to pick up some groceries or bring over a meal would be a big help.  Also, I have a friend who sometimes takes Mom with her to town or to lunch giving me a break.  I would like to have time to go out with my best friend or husband sometimes, but that doesn't seem to happen.  A day at home alone would be a big bonus.  I have talked to my son about taking Mom with him a day a month and look forward to that maybe happening soon.  He is willing, but has just moved back to the state and in a new job, so it may be awhile.  At any rate, these are some of the things that would help.  Anyone else out there with ideas or shared experiences?  Thanks.

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