Four years ago my husband Michael and I, embarked on one of the biggest adventures of our lives, the first ever “The long road to Amc Awareness” road trip, we had a goal of visiting thirty different families affected by Arthrogryposis, at their homes, one family a day for the whole month of June.
In this trip we interacted so differently with the families to what we were used to.
We were in their spaces seeing how they lived, listening to their stories and, understanding their needs on a deeper level, now after four years of travel and hundreds of families visited we have a completely different outlook on what it means to live with AMC.
One of the biggest eye openers for me was realizing that even we all had been affected by this rare condition it wasn’t the same for everyone. Not only because AMC has 400+ different types and it shows differently in every single person, but also because our life realities are so different, environments differ from family to family, and the way they are able to cope with Arthrogryposis.
I honestly felt guilty of all the times that had written about my thoughts on how to deal with AMC, I had written from experience yes, but only from mine. I needed to do so from a bigger picture.
There are parents that need to focus on their kid breathing properly before they can move into correcting their clubbed feet. There are parents that are still healing their soul wounds before they can be in the right place to provide treatment for their child. There are families that didn’t even had the correct diagnosis and they didn’t know where to start.
There are families that choose no treatment whatsoever, and you now what? Thats also very valid.
Whatever works for the family is what each family needs to do.
I was naive before thinking that everyone’s goal was to walk and that all you needed to treat and get mobile with arthrogryposis was will power and the right mindset.
Truly naive.
Each family is world of its own, each AMCer is a universe. There is no magic formula on how to act, all you need to know is that is if you are acting from love you are doing it right.
So…Please don’t let anyone treat you like you are not doing enough. They are talking from their experience and life necessities. And you, you are acting on what you think is best for you and your family... And that is totally how it should be.
We are all different… and this is something we all should acknowledge, but please also know that you are not alone, there are many families experiencing similar fights to yours, you are loved, understood and respected.
With much love,
Misha
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