a wonderland

Yesterday I mentioned that it was good that we had two days of filling up the love tanks because today was going to be a new experience.  And, as per the norm, new experiences are FUN (until they aren’t any more!).

We had the chance to hang out with other Texas EB families today.  It was so much fun!  I had no idea that there were so many other families within driving distance of one another.  There were even a few families that didn’t get to make the trek because of bad weather where they lived. There were kids with all types there… Julianne was probably one of the mildest cases in the group.  She looked HUGE next to some of these sweet butterflies because weight-gain is really difficult for kids when their calories are all going straight to healing their skin all the time.  Even with all of the different types and severities represented, the one thing that was common to everyone was that they weren’t letting EB get them down.  I watched a little three year old boy walk around, obviously in pain, but with the biggest smile on his face.  I seriously almost started crying.  So much bravery.

The picnic was held at a location called Morgan’s Wonderland.  It’s a park designed with special needs kids in mind.  All of the equipment is accessible to kids of all needs, and there are many sensory-rich activities to try out.  And Julianne enjoyed trying out all of them!

the carousel was a hit!
not a huge fan of the see-saw...
not a huge fan of the see-saw…
working on balance
working on balance
water play
water play

We all had lots of fun running around and playing, but towards the end, and nearing Miss J’s normal nap time, I was made aware yet again that while EB may be something we have to consider and care for, it’s definitely the adoption-related traumas that are more challenging; these are the things that stem not from what’s on the surface, but from what’s deep inside.  It’s moments when being at a sensory-rich park is too much, and we have to draw things in closer.  I hold her while she cries, and I talk to her when she refuses to look in my eyes.

We make use of the stroller and have some cool-down time.  Literally, and figuratively.

water bottle with a fan.  EB NECESSITY!!!
water bottle with a fan. EB NECESSITY!!!

MWL 82

The water bottle, her taggie blanket, and the stroller.  All comfortable and safe things, and she was able to mostly calm down, enough to start randomly spraying other kids and their moms as they came to chat. 😉

Overall?  An excellent outing.  I went into it knowing that it would be fun, but also hard.  I knew that she would run around and enjoy herself, and I knew that it would be “too much” pretty quickly as well.  I know that tonight and tomorrow will most likely have some sort of regression or behaviors that stem for the new experience, but it’s worth it.   I’m learning to adjust my expectations for what things look like, and she’s learning what life is like outside of the same four walls she grew up feeling comfortable in.  Slowly her exterior shell is breaking down and she’s letting us in.  Days like today are necessary for that process… she learns that she can trust us even when she’s overwhelmed by what is going on around her. Mommy is safe.  Mommy loves you.  Daddy is safe.  Daddy loves you.  Home is safe.


MWL 25


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