Our New Normal [s] » Our little family's realization, that there is no normal

My Biggest Fear aka. Trips to the Beach Gone Bad

This weekend as our family returned from the best trip of our life to CO, UT, WY, and SD National Parks tour – we decided to go to the beach on Saturday for a little respite from our severe case of “Take Me Back”.

As you all know, beach days for our family are much different than most people because of Vivia’s JDM.

Since February, (REMISSION) we have been able to have more ease of life and not having to be SO strict with our “NO OUTDOOR ACTIVITY” – we took a big shade tent, and reapplied her sunscreen every 20 – 30 minutes (which was even more frequent than the instructions on the sunscreen bottle said- just to be careful).

You can imagine my HORROR when at 3pm we got in the car and I began to see her face quickly turn 5o shades of Fire Engine Red.

This is something that can NOT happen! It is not just a discomfort thing for her, it can potentially be life or death.

The rest of her body is fine, the parts that were covered with the sun-protective clothing – fine. The parts that I slathered sunscreen over with the assumption that it too, would be fine – NOT FINE.

I am literally sick to my stomach over this and it is triggering me BIG TIME, all the nights of seeing my baby girl writhing in pain with tubes and needles and her losing herself to crazy high doses of steroids… I can’t.

Please be in prayer with us as we believe that this will NOT TRIGGER a flare.

Have a look below where you can see the damage.

First two photos are of Vivia’s burn which (these photos do not do it justice.) The second two photos are of the blisters that are on her nose – which she covered in makeup because she’s embarrassed how red she got.

I will call her Rheumatologist as soon as this holiday weekend is over so that I can discuss what, if any action we should take right now.

Stay Tuned.

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