Being an awful friend

Shwachman Diamond Syndrome is rare, really rare.  What's even more remarkable is that there is the sweetest family that lives just 30 miles from me and their little girl has Shwachman Diamond Syndrome.

We  met them within the first couple of years of their daughter getting the diagnosis, that was 5 years ago.  We did a really good job of staying in touch, meeting for lunch dates, swimming parties with the kids and Monday night bbq's and fun.

I don't really know what happened but all of a sudden, 2 years has passed and we have only talked to each other on the phone twice and haven't gotten together.  She now has a sweet little 18 month old boy who has Hemophilia.  Can you imagine how hard that must be to have three kids, one healthy, and two with completely different genetic diseases?  She has a lot on her plate!

Tonight, her oldest, healthy daughter was playing soccer at a field literally around the corner from our house. We walked down to watch the game and catch up.  I felt awful as we visited that I haven't done more to support her and help her.

She is still really scared about what the future holds for her sweet little girl.  She has no real support when it comes to acquiring knowledge about SDS and so it has become just a bunch of unknowns that are freaking her out.  I should have been there more for her.  I should be helping her navigate the doctors and helping her find answers to some of the things she worries about.  I really feel like the worst friend ever!

She's not ready for a support group and definitely not ready to hear about all the things that can go wrong but she does need some validation that things are going to be okay.  I'm glad my kids were able to come with me and she could ask them all sorts of questions about what the different pains feel like, what they do to cope, how they are accepted by friends, if they are scared of getting sick or dying...My kids were really open and honest and I think that helped.

Listening to my kids made me stand in awe of them!  We don't seem that out of the ordinary to me at least, but tonight felt almost surreal, as if I was listening to strangers.  For a moment, I forgot they were my kids and I was feeling shock and sadness as I heard them describe the difficulties of their life with SDS.  Then I realized that these were my kids!!!  My strong, humble, amazing kids who were sitting here helping a mother who is so sad and scared!  It was amazing but a little sad too.  I am glad all over again that we can use SDS and our experience with chronic illness to help someone, to make their world a little more peaceful even for one night.

I need to do better at being a good friend.  I really have been caught up and bogged down in my own little world of hurt but she has really needed someone, someone who could understand just how crazy SDS is.



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