Going Dark

Oh man, I went dark for a while. As everyone is, I’m trying to grapple with the ever increasing speed of my life. With the onset of winter, the dark days have left me feeling unmotivated and quite sluggish. We have an inability to get outside with how cold it has been and the darkness has been creeping in. Thank God we are on the other side of the solstice and the days are inching longer and longer by the minutes. We are almost done with a much needed addition to our lovely home. Definitely entering decision fatigue with the last details…and realizing how much our interior design ideas differ. I’ve found myself very tired lately. Not tired with life, but tired with the incessant needs of Noah. I’m tired of the therapies and the appointments. I’m tired of people asking me how Noah is doing. Tired of the thoughts, the energy, the finances it takes to care for Noah. Tired of comparing myself and my child to others. Tired of telling people repeatedly that he can’t have gluten. Tired of feeling alone in my family. Tired of feeling guilty when we miss a therapy. Tired of feeling angry and jealous looking at friends and family parenting a long side me. Tired. Exhausted. Maybe that’s just parenting and I have unrealistic expectations on how I should feel, but right now I wish all of that would disappear and we could live a “normal” life where my three year old is discussing what his favorite dinosaur is. Side note: our kids are anything but normal. I’m sorry to future Lou and Noah and how embarrassing we will be as parents. I’m also sorry for the weirdness you were born into. It’s unavoidable. I think you will eventually thank us for the obscurity of your life. Until then, I will resign myself to being the strange, uncool, uncouth mother I knew I would be.

There is a rising existential crisis in my fear of not being able to talk to/with Noah as he grows older. Last week not one, but two of his therapists (two different appointments on two different days) got the privilege of watching me cry. The parents in the waiting room got a show too. I was asking if there was anything we could do to help Noah progress with language. They handled it with such grace and explained we could look into a talker. They also mentioned he had been blooming in other areas so speech was going to take a back seat while he was focused on other areas. Turns out, having kids is the most raw, vulnerable and emotionally unstable thing I’ve done in my life. At my office when mom’s cry, it’s always hard. I never know how to respond. Once, I tried to bond with a mom who had an adult child with Down syndrome, and her son was having a rough time at the office. So, I thought, hey, let’s connect. I said, “Oh, my son has DS too!” She immediately burst into tears, and of course, I followed suit. Lately, I have been drowning in a sea of hopelessness. There are no lifeboats anywhere to be found, and certainly no shoreline to see. The emotional roller coaster of having a Noah resembles a sine wave. The highs are high and the lows are low, the latter I am currently residing. We are going through a period where he is yelling. Yelling when he wants or doesn’t want something. Yelling when he is happy or sad. Yelling when he needs attention. They are short burst mind you, but full of vigor and volume. We are not inconspicuous in public. I know he is struggling to communicate and I imagine him feeling alone in his world which contributes to more emotional torture on my end.

There is a longing, deep and visceral in me that wants to be able to have a conversation with him. I see three year olds all day and most of them are extremely communicative, hilarious and gregarious. Then I go home with Noah and realize how different things are. How vast the chasm of ability is. It’s hard to stay positive throughout this process. It’s one of the reasons I deleted the instagram. I was watching other families celebrate their child having DS. It made me feel like I was somehow failing because, here’s a shocking admission, I still wish my son didn’t have Down syndrome. Turns out comparison doesn’t discriminate. I know we have turned to use of non-verbal communications - signing, stomping, pointing, waving hands, etc. These work but they don’t replace the ability to have a deep, meaningful, conversation. They don’t replace the ability to hear your child read aloud with you. They don’t replace the chance to hear them sing or argue with their sibling or tell you about their day or say the words, I love you. I’m not ruling out that we’ll get there, but right now it feels a lot like trying to climb out of the Grand Canyon with no map, questionable gear, and a strong chance of sitting down and eating snacks instead.

I love Noah despite his Down syndrome, and even because of his Down syndrome. It’s this magical, complicated, dynamic mix of emotions that make him unique. Parenting came in a package I didn’t expect. I missed the fine print before pushing “ORDER.” There was no gift receipt, no refunds and no instructions. Luckily for Noah, Josh and I are pretty good at winging it. He will definitely suffer from some of our unpreparedness/lack of attention to detail. I also think the unpreparedness generates spontaneity, which can create growth that spills into other areas of life. It can allow for experiences he wouldn’t otherwise gain. Spontaneity, by nature, invites possibility. It forces us to trust ourselves, to adapt, to embrace the unknown. Of course, being unprepared isn’t always glamorous. However, there’s something about loosening our grip on the need to control that allows growth to take root in ways we never expected. His zest for life, charming personality and good looks, almost make up for the fact that he doesn’t talk. Jokes. As I have said, we are excelling at not knowing what we are doing. Learning along the way - and honestly? we are ok with that. It’s really the future forward thinking that gets me into my lows with Noah. The “what-ifs” like to creep in like the boogey man. So long as I take it day by day ( sometimes minute by minute) I am in a much better place. Catastrophizing about his future doesn’t serve me or my family.