Raising {K} these past 3 months has been a complete eye opener, a game changing experience.  Never before as parents have we been faced with as much emotion over a child.  The low lows and the high highs.  She is the first of our children that we have seen struggle physically.  If you have been reading this blog you know that {K} has arthrogryposis (AMC for short).  It affects her ability to bend many of the joints in her body.  Because it is fairly rare, (1 in every 3,000 births) most people have never heard of this condition and are taken aback the first time they see {K} moving around.  In photos it is easy to find the ‘right’ angle, position her body just so… make it look like nothing is different.  But things are different, and that’s OK. This is real life.

Each time that our family is out in public, I can see people watching her.  I don’t think she notices… yet, but sometimes it does bother me.  I always try to take a step back and remember what life was like before this diagnosis became part of our every day.  If I had seen someone moving the way she does, tackling things in their own special way, would I have been the one sneaking peeks?  Probably.  It’s not necessarily done in a mean or mocking way. People are curious.

When we first committed to adopting her, we scoured the internet – searching for videos of children and adults living with arthrogryposis.  We were curious.  Were they living full, happy lives?  Were they able to feed themselves?  Drive a car?  Go to school?  Did they marry?  Have children?  We found some videos, but not many. And so, knowing that there may be others out there who are either considering adopting a child with AMC or have just been given the diagnosis as a new parent and could use the encouragement, I am going to be starting a series of videos that showcase how adaptable people with this condition really are!  In fact, as I will write about at a later date, I really hesitate to call arthrogryposis a disability.  People living with it may do things a bit differently – but they are ABLE!  I also want {K} to look back when she is older and see how far she has come, how much strength she has gained.  She learned to walk at 6 years old (just a little over half a year ago) and there is no stopping her now!

Keep in mind that each person with AMC is affected differently.  Some may have very little function in their upper limbs, others may not have use of their legs.  Many, like {K}, are affected in most joints on a less severe degree. Probably {K}s biggest challenges are her knees and shoulders.  She can bend her knees about 15-20 degrees at this point (though she is gaining more flexibility the more she uses them!).  Her shoulders do move, but not in full rotation.  She can not lift her hands actively above her head.  They can be pulled into that position, but will not remain there when she isn’t grasping onto something.  Her biggest strengths are definitely her iron will/ determination and her super strong grip!  Mark my words, that girl will be swinging on the monkey bars before too long! She can hang on SO tight!

Here she is from yesterday’s trip to the playground.  This particular piece of equipment is a tower like structure that at the very top is over 6 feet above the ground.  We have worked on it for weeks and weeks to figure out the best way that she could approach it, and she has gained confidence enough to climb from bottom to top on her own (I started the video late, when she was already part way up).  While videotaping, I was standing close by – one hand ready to catch her if she fell. She didn’t.

I recently found this New Zealand documentary that shares the stories of people living with arthrogryposis.  It’s a great one to watch if you are curious about this condition and it does a wonderful job of explaining the thoughts and feelings of people living with it.

I look forward to adding more videos to our YouTube channel, to document every day life with arthrogryposis.