Tuesday, September 10, 2013


Matt and I are very big into relationships. We work hard to strengthen, build, develop, and invest in relationships we have or feel we would like in our lives. Matt and I think these relationships are important and drive much in our lives. We like having friends and we like our kids having friends. Having friends with kids that are near our kids ages was and is

very important to both of us.

I have always had dreams of grand things for myself, my family, and my kids. I day dreamed situations of political leadership, scientific discoveries, athletic skills, historical or educational brilliance, business dominance, or even fame of the Hollywood persuasion. I felt amazing and unique, I wanted my kids to be amazing and unique, and wished big dreams for them. I wanted uniqueness in the real way, not the "every kid get's a trophy because everyone has value" kind of way.

Then we were slammed with Johnny's diagnosis. I wanted unique and I got unique. He is one in 400,000 that possess that extra chromosome here in the United States. He has physical characteristics that set him apart. He will very well struggle in a way that makes him different from the group. And suddenly, all I could possibly crave was normalcy for him. Gone were the dreams of being an olympian/actor/president/mogul/noble prize winner/author and it it's place were dreams for a perfectly average life.

Within that average life, what I crave most for Johnny are friendships. I yearn for true, deep, meaningful, supportive friendships. I want people to desire to spend time with my son. I want others to feel his magnetism. I want kids to automatically include him in their friends list, to place him on their birthday invite list, to ask where he is if he is absent or gone for some reason or another, and to beg for chances to play with him. I fear the day he is shunned by who he thinks are his buddies because he is different. I worry about the first party he is left out of because his pals (or their parents) don't want to invite him. My heart aches thinking about people running away from him on the playground or at school because they fear him or don't want to be around him.

I won't even venture down the road of concerns about him being verbally abused or made fun of.

I worry too about the girls, how their friendships will be impacted by his presence, how their lives will overall be better, but how much of a struggle those lessons may be one day. How hard it will be to explain about their brother, how difficult it may be to have to balance their desire for acceptance and their love for him, and how kids can be cruel enough to the most "perfect" of children, much less the easy targets and what that will mean for them. I worry both about their shame at having a brother with special needs and the guilt associated with feeling that shame that will eventually come around as well. I pray that they will be able to forgive themselves for the inevitable frustration that will come at some point.

It's hard because it is all so innate and deep in human nature. The desire to be...desired. The hope that other's will love you and that your presence will be just as nourishing to others as their presence is to you. We all want acceptance into a group, into our pack. Nobody wishes to be left behind, especially not on a consistent basis.

I can worry and pray about the future, but I can't make friends for him. I pray for him, but I also pray for his future friends. That they are good people who enrich our lives and feel enriched in turn. I pray for their hearts and for strength when the friendship becomes challenging. Today, it means so much to us, to see the rallying force of our friends while we wait for Johnny to make his own. I admire the pure love shown for our son and the treatment of him as being normal around their children. They couldn't possibly know how wonderful it is to hear them refer to Johnny as their kid's best buddy or friend or future best man at their wedding...and wouldn't he be the perfect best man! It can be stated aloud or posted as a simple facebook status or message, but it means.so.much. Consistently, tears spring to my eyes and my throat swells with a heart that fills to the brim each time I hear this. I cannot help but be nourished by the "I love you"s, the requests for snuggles, and the happy gazes sent in his direction. If these friends are any indication of how their children will love my son (and my daughters) then our lives will continue to be rich indeed.

No comments: