Friendship, fellowship and everything in between in our Down syndrome community.

I love our Down syndrome community.  The information, the support, and connecting with other families.  When I get a chance to meet new families one of the first things I say is welcome to the most supportive community there is.  Myself and another parent had a booth at a special needs resource fair and we met a women who’s child did not have a diagnosis, she came over to us and eagerly chatted.  She mentioned that she so wished she had a community to belong to and that is what she admired about our Down syndrome community.  We are strong in numbers and will always have someone to fall back on when we need support the most.  One definition of "community" in Webster’s dictionary is ,“a feeling of fellowship with others as a result of sharing common attitudes, interests and goals.”  That is so very true in the sense.  Fellowship is a friendly association with others and that’s where I want to distinguish the differences I have experienced between friendly association and being friends in our community.

I started with that notion that I wanted to be instant friends with every family that I met with Down syndrome.  Our kids both have Down syndrome, so we will and have to be best friends.  We have to be because I’m not sure if my other friends will understand.  I went through a time in the beginning where I chose to only talk to other moms who have kids with Down syndrome. Don’t get me wrong it was a huge blessing, to be able to navigate our path with others going through the same stages together. I do treasure this, always have, and always will in the years to come.  But after a while you see the notion come to life that your child is more than Down syndrome and that is what you start to fight for from others. If I want others to see my son for more than Down syndrome, then why is my life revolving around only it? Down syndrome is just a small part of my son. It does not define him or my family. You also come to realize that there is more to your family and other families than Down syndrome.  There are different parenting styles, culture, views and opinions and they may not align with your family’s.  So when you realize this, you may feel let down but you realize that it’s ok that Down syndrome wasn’t the glue to maintain a friendship.

So what is my point here?  Simple: You don’t have to be friends with every parent that has a child with Down syndrome. It just doesn’t happen and it isn’t realistic.

But I want to talk about the amazing fellowship that is and should be happening in our community.  Let’s remember to always respect other families and the stages of the journey they are on.  I know everyone isn’t like me, an open book, who will talk to anyone I see with Down syndrome and say, “Hello”.  Maybe someone isn’t ready to be so open. We can’t always assume someone is being exclusive or unfriendly. There may be language barriers, cultural differences or someone who is really struggling with the diagnosis. In those cases, a simple hello and smile can go a long way.  We can’t take anything personal, for this journey is ours and no one else’s. We may be on the same path, but the journey is our own.  In my time in our community, I’ve seen so much support go out to families that are in need or need help during a difficult time.  I’ve seen us come together to be there for one another, cry tears together and deliver so many meals for those who have a little one in the hospital or lost someone they loved.  We need to provide this support and fellowship to everyone that is ready to receive it in our community.  We all know about inclusion, and being human; it does get overlooked and forgotten in our community sometimes as well. Include everyone who needs support, include everyone who might be different than you (Sound familiar?), Include everyone that may be shy or unsure about opening up, and include everyone who loves someone with an extra 21^st chromosome. Let’s always remember this unique fellowship in our community and take pride in our inspiring group that is ever so desired by others in the special needs community.

I’ve learned so much about Down syndrome in the past three years since my son was born.  Most importantly I’ve learned so much about him in these past three years. I’m seeing more and more that Down syndrome is just small part of our lives even though people looking in may think it’s the biggest part of our lives.   I just love that the little extra chromosome comes with a big community of friendship, fellowship and support.