It’s been a long road to get to where we are now.  From being brand new parents, not really knowing what to expect.  To having a 9 1/2 year old boy with a rare genetic disorder.  Cayden has brought us much joy, sometimes in the middle of a rough patch it is hard to remember that.

It has been a journey and along the way we have met other families that also have children with rare disorders.  I think the hardest part as a parent is not knowing what to expect.  I had a friend ask me what it will be like for Cayden in the upcoming years.  Honestly, I don’t have a clue.  The genetic disorder that Cayden has affects his 7th chromosome.  There aren’t a lot of other children or adults with Cayden’s exact duplication.  In fact I don’t think I found one that is exactly the same.

This makes it really hard to know what to expect in the coming years.  We are planning on having Cayden live with us for as long as possible.  We haven’t decided on how to do that yet, but would like to find a place with some land so Cayden can have his own space.

What’s really amazing is to see how far Cayden has come.  In the first couple of years, Cayden struggled to learn to crawl and eventually walk.  He had very limited speech and had trouble with gross motor and fine motor skills.  Now, he is able to button his own pants, make himself a bowl of cereal, run and play with his brother.  He can read, do math, communicate with others.  He has really come a long ways in the past few years.

I try not to forget that.  When he has a rough day, it seems like he still has so far to come.  But in reality, he has already grown so much.  I’m excited to see how much he’ll grow in the next couple of years and to see where we will be in another nine years.