National Siblings Day

There are so many made-up holidays (Galintines day) or Hallmark holidays (Mother’s Day), every day there seems to be another FaceBook holiday (my personal favorites are National Wine and National Margarita day). My FaceBook feed has been full of Siblings Day posts.

Siblings day, apparently is a thing. Since no surprise presents have showed up for Bridget today, I think her sister must be as clueless as I am about the social media pressure of Siblings Day.

Then I realized, in the life of rare disease and having a disabled sibling, every day is sibling day. If you are lucky.

It starts out simple and fun, using your sibling to make it cool to meet Tinkerbelle. That balances out the hours spent in the waiting room while the typical sibling does their homework in total chaos while their rare sibling spends 2 hours in therapies.

The Siblings in a rare family have a rare bond. The typical sibling knows that they will one day be responsible for the care of the disabled sibling. That so much of their life is molded by forces beyond anyone’s control. Every part of the disabled siblings life has a ripple affect on the typical family.

Playdates are different, school events are different, vacations are adapted and holidays are just different. Band recitals are interrupted by the disabled sibling charging the stage.

Abbey’s 5th grade recital interrupted by a very excited Bridget 🙂

Every day the typical sibling understands that they will one day be responsible for the care and the custody of the disabled sibling. The typical sibling gets involved at a very early age in discussions that honestly the parents are struggling with but need to have so the typical sibling is not surprised.

The typical sibling knows how many doctors the disabled sibling has, what medications they take and what foods they can eat. They know what therapies the disabled child is in and incorporates it in everything they do with their sibling.

The siblings have fun together, they go on adventures together and they form a bond that is some days surreal and all days inspiring.

For the family with a disabled child, sibling day is every day. A balance between giving all siblings the attention they deserve and watching as a bond becomes more than any parent could imagine.

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