The Tricky World of Support Systems

The Rare Life podcast recently had a wonderful episode geared towards support systems of parents who are raising medically complex children. I highly recommend this episode (and podcast). The episode showcased so much grace and love for everyone. It was not an opportunity to air out grievances! It was a time to be honest and insightful while sharing learning experiences. There were some experiences I did not relate to, however, it did provoke reflection, so I would like to share with you some of my own thoughts!

Ways to support:

🦓Know that the majority of the time they are isolated not inundated. A friend told me "it must be hard to only have support

when your world is on fire." And it honestly made me emotional because it can feel that way at times. When Atticus is admitted in the hospital we have so many wonderful people there for us in an instant. But during those heavy seasons of chronic struggles at home it feels too quiet and alone. People LOVINGLY assume we need space. But a lot of space is just hard. Of course, we fail here too because it's hard for us to voice what we need.

🦓Invite them! Phone call, coffee date, a walk. This may not be for everyone but survival mode can be constant, so if leaving their home is too much work then you may need to go to them. This part is crucial.

Ps: if you know they won't make it to your event, still invite them.

🦓Offer to listen. Sometimes the processing of a certain event can happen days, weeks, or months later. Don't forget them as days go by. Example, I'm JUST now processing Atticus last anaphylaxis. Usually in the moment of a crisis we are running off of adrenaline. The emotions are not there yet because we are in shock. That will wear off and by then everyone thinks we are back on our feet.

🦓You can't fix their issues, they are complex problems and it's a new territory for everyone. So offer to listen rather then give advice. (Of course there's a time and place for resources and wisdom.)

🦓Don't try to make their situation positive. That is invalidating and often feels like a punch in the gut. Like their grief isn't real or appropriate. But rather, tell them that you'll sit in this with them. Ask questions about what they are feeling and how they are processing. After this talking about blessings and positives may be accepted if the other person is ready to explore those thoughts.

🦓Offer specific lines of help. What is hard for families like ours is that we don't know what we need. We are not used to asking for help. If you say "what do you need" I often say "uh I don't know!" And this is so common!

Ideas: hire a cleaning service for them, money for a special meal, offer to come over and help them with a chore like laundry or dishes, tell them to order their week's groceries and you'll pick them up and deliver them (they still pay you just deliver), offer to be present in their home, ask them what their current expense is for their child (you don't have to give the total amount).

🦓Get to know their child's diseases. If you're not sure if they want to talk about their child's diagnoses just ask. "Hey I am wondering if you'd be open to teach me more of your child's diagnoses." OR better yet, "hey what are some resources I could read to learn about so-and-so disease better." And yes, ask because the internet may give you some really awful and incorrect information on rare diseases.

🦓Word of of advice to you: if their trauma and journey are too much for you then know that we can see that. It's hard for us to receive this kind of reaction because our stories, children, and our life matters. This is one is hard to take in and honestly I'm still processing what is the appropriate and loving response. So please forgive me for the lack of follow up on this one.

If you are a loved one of someone who is parenting a medically complex child please know we are all learning. This is all just advice and reflection as to what we have learned so far. We don't anticipate everyone to "get it right" but rather we are all her to learn together. You can't be all these things at once, but it's great to have some pointers and food for thought. As a parent I know I love and adore my support system and I'm so grateful for them!

We are all learning together!