In this wild and varied world sometimes is difficult to see the big picture and asume because our life is the way it is others must be the same. And that, my friend, couldn’t be further from reality, we live in a world were life experiences define who we are, whether we like it or not.
In my journey I’ve been lucky to share so many experiences with other people from different countries, lifestyles, and realities, that my view has opened beyond I ever could imagine before. In this times, I have learned that what I want or need can be, and probably is, totally different to the next person.
Now that I have more time to spend on social media, I have be noticing more and more that a lot of the suggestions between Arthrogryposis families come with hint of you are not doing enough, without taking in consideration that yes, you might have the time to take your child to PT 4 hours a day 5 days a week, and if you can others can to. But in reality you don’t know what the next person is going through.
This is why at this time I would like to talk about Arthrogryposis specifically.
I feel truly privileged to have been born were is was born, with the support system my mom and I had. Even though my mom had me at 21, and she and my dad got separated the next year, we had the family support where we could go to PT every day for 5 days a week, and also my AMC didn’t bring other health issues that made it way more complicated than it is. But, I know this is not everyone’s reality.
I’ve seen families where there are 5 siblings, no dad, mom with three jobs just to keep them afloat and almost no time to even do 15 minutes stretching at home. I’ve also seen families where the kid has been in specialized treatment since the day he/she was born but, their AMC is so complex that it just has a completely different outcome.
I have also met families that think is best for them, and for their child, not to peruse treatment and get them as comfy as they can while living their lives as they come.
In all theses cases it does not mean a parent is doing more or less for their child, it means that they are doing what they can from their life experiences, and in most cases what is best for them.
No shaming should be present in any of this cases. I know is easy to say but if I did it everyone can, but if you think others might be thinking the same about your situation and they are also not right.
We live with a varied condition in a varied world were most are truly trying their best.
It’s time to stop the and see the situation for what it is, a condition that varies from person to person and a reality that changes from family to family. Let’s support each other with kindness, compassion and the love that is always needed.
We are such a beautiful and strong community, blessed with families that are so involved, is important to always remember that everyone is trying their best most of the time.
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