Preparing Friends & Family Coming to Stay With Us

We are prepping for our DEAR friends to come visit! We haven’t seen them in over a year and we’re really excited – but we’re also aware a lot has changed since that time.

There are so many conditions that we have to share with friends and family before we have them over so they’re adequately prepared.

It’s hard to share what we need because it’s SO DIFFERENT than how others typically live. These friends have been holding our hands through this journey and I know they’ll continue to do so!

Here are a few things I felt were noteworthy to mention to prepare them for their trip...

• A review of our food routines (Soraya has to have certain foods as part of her routines) and all the medical equipment they will see in our house.

• A heads up that Soraya barely moves from the couch – she’s on a screen all of the time as she’s too tired to do anything else. Subsequently, Leena is on a screen just to be next to Soraya (Remember, I am a pediatrician!!! This is SOOOO against AAP guidelines!).

• Because of her fatigue, Soraya’s bedtime is 6:45pm.

• Soraya may talk about death. If she does, the BEST response is “Thank you for sharing that with me.” (➡️ This leads to the question “Will you talk to your kids about death ahead of our visit or deal with it only if it comes up?”)

• An explanation of why Soraya, who is only 11, has acrylic nails (to avoid picking her skin! An issue she has dealt with for years) and why Leena, who is only 9, has a cell phone (to follow Soraya’s blood sugars).

I have to admit, after I texted them everything I thought, Well, this is probably why we don’t have many people come stay with us...

Thankfully, despite all of the above, they are still CHOOSING to come! Soo grateful for accepting friendships like this 🩷🩷