Is There Another Side?

Recently I have been thinking about, “being on the other side” of Noah’s diagnosis - the not sad, the not grieving the loss of a child you thought you’d have, the not wondering what he would look like without DS, the not mourning a loss of all possibilities of his future side. Josh grew up going to church with friends that have a 28 year old son with Down Syndrome. Shortly after Noah was born, we met with them over dinner at their house. Josh’s idea. We show up for dinner and their son wasn’t yet at the table. We were chatting and carrying on, when he comes out from his room. I welled up with emotion and excused myself to the bathroom. I was crying uncontrollably, like ugly cry sobbing. Even writing about it now I am getting bleary eyed. I don’t know how long I was in the bathroom but I’m sure it was long enough they thought I had a bad #2 situation or something was wrong.

While in the bathroom I looked in the mirror, not even recognizing myself. My face was splotchy, I was out of control, depressed, too thin, hair a wreck (okay, this is always true), buckets of tears streaming down, didn’t remember the last time I put on real clothes or deodorant, the mother to a child with Down Syndrome. I slapped myself a couple of times, telling myself to get it together. I was angry that I couldn’t keep it together. I splashed cold water on my face and rinsed my eyes, in hopes my crying tantrum wouldn’t be noticeable. I came back to the table and I’m sure everyone felt super awkward. The friends we were eating with were gracious, nobody said a d**n word. After dinner we sat with our friends and discussed their feelings on having a child with Down Syndrome and what it had been like over the years. It appeared to me they were unaffected. They had no real complaints or anger. They told us their story and some difficulties raising their son, but overall seemed content with the situation. I was perplexed. How could this life altering, mind blowing, trajectory changing thing happen and you just seem to accept it? How many years did it take them to reach such a peaceful level of acceptance? Did they forget what those first days, weeks, years were like? What was their secret? I left that evening in turmoil. Obviously, there is a life of acceptance I could find, however, right then it felt impossible.

I’ve recounted this story with those same friends and thanked them for their graciousness and understanding. They just chuckled with a knowing smile. The coolest thing about connecting with them (or any family that has a child with Down Syndrome) is when they say, “your kid is cute and amazing,” you know they mean it. There’s a bond, a solidarity, a trust and honesty you couldn’t have otherwise. The manner in which they interact with your child is meaningful and authentic.

Last week Josh asked me, “do you think having Noah was a good hard?” My immediate response was, “no.” Classic. Ready, fire, aim. Negative Nancy. As we discussed further I realized how nuanced and intricate the question is. Of course I thought hard things are good for you, they make you stronger, more resilient, and able to persevere. We have had arduous things in our life: death, doctorate programs, masters programs, divorce, international moves, abuse, suicide. But not difficult situations like your son having Down Syndrome, those aren’t good for you. Those are just…hard. We started talking about everything we had gained from Noah’s diagnosis: deeper connection, a sense of purpose and direction, closer friends, re-arranging our priorities, a better sense of who we are as a family and where we want to go, we set new goals, threw out old prejudices, unconditional love in the truest sense, got a little softer on the inside, tried new things, got vulnerable, found a sense of freedom. After being victim to Josh’s constant positivity, I would say having Noah has been a good hard. When you’re going through a hard experience it’s difficult to see the good changes happening, while it’s effortless to sail into the negative. Quite honestly, sometimes it’s easier to give up. I have definite felt like giving up at times throughout this. What I have started to realize is it’s acceptable for an experience to be good and bad, joyful and miserable. It doesn’t have to be either/or. As a black and white thinker myself, this phenomenon has been very difficult for me to grasp. My husband always tells me the world is grey. Slowly but surely I’m improving at allowing room for both sides to be true at the same time.

The pink puffer was on sale….

Nestled in this extremely difficult experience are beneficial changes that have been teased out over time. I’m sure there are more meaningful changes to come. At the end of the conversation, Josh said, “even though it’s hard, I wouldn’t take Noah’s Down Syndrome away. I love who he is and DS is a part of him.” I had to sit with this for a while and really contemplate. Of course I love Noah and who he but I have to admit, a lot of days I wish he didn’t have Down Syndrome. It’s easy to romanticize the, “what ifs” in life. What would he look like without DS? If Noah didn’t have DS would he have the same sparkling, bubbly personality? I have no idea but I LOVE his personality and I wouldn’t trade that in. When we had Lou we were excited to have a neurotypical child. Ecstatic! Yet, sometimes I find myself whispering under my breath, “Lou, I wish you’d find a better attitude like your brother.” Noah’s sweet disposition and joyful demeanor are two of my favorite things about him. The reality is, he is partly (or wholly) who he is because of his extra 21st chromosome. Am I thankful for Down Syndrome? I don’t know.

So I’ve been thinking, is there another side? We travel through a nexus of time and land in a place of complete, utter, unconditional acceptance and love for Noah having Down Syndrome. If there is flip side, what does it look like? Does it look like our friends who have adult children with DS? They seemed to have the magic sauce. I’m certainly do not feel like I’m there, but I’m working on it. I still worry about what it’s like for him in the future. Him having to watch his siblings get married, or drive, or live independently. Watching him be limited by his disability. All of these things shatter me. Ultimately, it’s not about me and I have to remember Noah didn’t ask for Down Syndrome. He didn’t ask for his disability. It can get so philosophical and deep, all twisted up in your mind. I’ve been to some dark caves along this journey. Some I didn’t think I would crawl out of.

We all know we are different from one another and we accept those differences, so long as they are within certain parameters. I like you if you’re the same kind of different than me. Well, that defeats the whole purpose. There is something in society though that holds disabilities at an arms length. There’s a sadness and despair about disabilities. A separation occurs. I don’t have the same sadness or despair about Noah as I once did. Some days, I still question why he wasn’t one of our miscarriages or why he is here or why people have disabilities in the first place. You can go round and round asking, “why".” In my limited experience, instead of asking “why,” asking, “what am I supposed to learn from this and how do I respond,” will further your progress. I don’t think being on the other side means not worrying about these things, because everyone with kids worries about these things. I don’t know what it looks like but it feels ethereal and unobtainable. Somedays I think I’m there. I’m on the Down syndrome train, full steam ahead - advocating, loving, connecting with other families, starting a resource delivery program, telling sweet stories about Noah and how awesome he is and how has changed our lives. Then other nights, I cry myself to sleep thinking about it. I’m not even sure when or if we reach “the other side” we will know. I think it will be so natural and unassuming. There are two sides to every situation, somedays you land on the good and somedays you land on the bad. And that’s allowed.