Social Butterflies

We are medical social butterflies this spring, Miss M!  More opportunities to practice your eyelash batting at strangers.

This weekend the NICU where you spent your first 4 days is having their annual reunion.  We’ll be taking you for two reasons.  First, we are embracing our status as a family with a child with special medical needs – it is nice to go to a place where it’s probable there will be other families with children who have overcome amazing odds, and to feel that community support.  That’s just our life now.  The second reason is that there is a bounce house and your brother loooooves bounce houses!

I also just RVSP’d to the cleft family picnic later this spring.  Again, mostly for the same reasons – community support, and they have a train ride for your big bro.  What 3 year old boy doesn’t love train rides?!

I was surprised recently when a very observant friend said how isolating a chronic disease can be, especially for parents.  She said she still sees how much it affects her own mom (and I don’t think she was diagnosed with her chronic illness until she was just out of college, so it’s mainly affected her as an adult, living away from her family.  It has, however, had a major impact on her life, and she was even near death on one occasion).

And it is isolating.  I think that could be the title of this blog.  Isolation.  But that is too depressing.  So, these events are so important for us as a family.  We get to feel normal, and your older brother gets some special attention.  Before having you, Miss M, I didn’t get that.  I would have thought that hanging out with a bunch of kids who’d spent a lot of time in the hospital would be sad and depressing.  Now I realize it’s the day to day challenges that can get depressing, so these family events are so important to provide a place to feel normal, to feel like part of a bigger medical family.

The isolation ebbs and wanes.  As you get older, we spend less time worrying about your medical milestones, and more time enjoying you as a baby.  Which makes us more like all of the “other” families, and I feel more comfortable talking about all of the wonderful things my baby is doing with friends who have babies who don’t happen to have the same medical challenges.  I know there will be plenty of isolating moments again in the future – each surgery, each diagnosis, each milestone missed, each therapy session.  So for now, we’ll continue to embrace the opportunity to meet others who have/are struggling with similar challenges.


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