In the “know”

At the inception of this blog, I promised to be honest about my feelings – good or bad. I have often used this as an outlet for my emotions. In a way, this blog is my journal. I write for those that read Our Journey Through Life but mostly, I write for me.

Sometimes, I write just to share. I love sharing our family with those that are interested and/or stumble across this blog. Other times I write to encapsulate a memory. It’s a way to keep track of all the (mostly) wonderful things that happen in our lives (and gets me out of having to write much in the baby books!). Many times, I write a blog post to help me process. As I write, the feelings reveal themselves and I work through them.

As much as I hate to feel this way, today I am writing because I am a little bummed, for lack of a better word. We went bowling today. Half way through our second game, a family joined us in the adjoining lane. They had a teenage son with them whom I suspected had Down syndrome. I found myself hesitant to say anything because I just wasn’t 100% sure. And why did I really need to say anything anyway? They were having a good time and I enjoyed watching him interact with his family. As Eli waved and smiled at them, I wondered if they knew that he had Down syndrome. Again, this is where the secret handshake would come in handy! When we were packing up our things to leave, the mom said to me, “Where do you guys live?”. Kind of confused, I told her and then she said, “Are you familiar with the Down syndrome community?”. Well, there it is. She knew. She didn’t ask, she just knew. I left wondering what it was about Eli that made her so sure he had Down syndrome. As we drove home, I was so conflicted with my feelings. Who cares that she knows I thought to myself. It’s not like it’s something we’re trying to hide. I guess I was just a little shocked. She was just so certain that she didn’t even bother to ask subtly.

I’m not sure why the unsettling feelings arose in me after that encounter – But, they did. So now I’ve spent half the night obsessing over why. I am so proud of Eli and everything about him – His extra chromosome included. Who cares that his features gave him away? Why does it matter how she knew? But it does matter to me. And I don’t know why.

One of the very first things I said when Eli was born was, “Can you tell?”. What I meant was, can you tell he has Down syndrome. I am so ashamed of that. My newborn son was struggling for breath (I wasn’t aware of that at the time – I thought they were just checking him out) and I was worried what he looked like. I can never take those words back. Never.

Here I am, almost 16 months later, and that ugly, shallow voice inside me has returned. You can “tell”. People know. Apparently, it’s obvious. Now he can be pre-judged with automatic limitations put on him. He can be a stereotype to people. I DON’T WANT THAT! I have lived in this blissful world of baby oblivion. I want to stay there. Sure, my son has a therapist come over each week to help him learn to crawl, stand, walk, talk – but therapy has become just a part of life. We are blessed with therapists who NEVER tell us what Eli can’t do but constantly tell us what he can, and WILL, do. I don’t want to deal with the other stuff. I really, really, don’t.

I know that mom at the bowling alley today was just trying to be supportive. She invited us to an upcoming event. She was reaching out to us and I turned it into so much more.

It may be time to go back and take the advice I once gave my pregnant self. Stay in the moment. Don’t worry about the future, the what if’s, so much. Everything will be ok.

Sometimes, feelings surface that we just don’t understand. Today is one of those days. Not every day will be a glass half full kind of day. Some days, you fill that glass with wine, drink it dry, and fill up a new glass tomorrow.

Eli has 47 chromosomes and he was called out on it today. So what? That extra chromosome just makes him extra cute!



11 comments on “In the “know”

  1. Melanie….your humble heart and passionate spirit inspire all of us. Your three young men are blessed to have you watching over them, and are also blessed by your faith in our God; you’re welcome to come worship with us at VCA any time.
    We continue to pray for all of you!

  2. Hi Melanie,
    I remember when that first happened to me and I felt exactly how you did. I guess thinking back on it, I saw Alex for so much more than the Ds, but other people didn’t really know him, just saw the Ds. It hurt at first, but now people look at him and they immediately warm up- he has a way of changing people for the better. It’s hard to explain it, but I can see their faces softening and they seem friendlier. I guess also having a son with autism who looks “typical” but doesn’t act it usually has made me look at the whole features thing differently. People look at my younger son and see that he looks like any other kid but doesn’t act like it and immediately judge either our parenting skills or say “what a brat” but when they look at Alex, they know that he has Down syndrome and they are more understanding. It took me a long time to come to this conclusion though. Give it time…it will get easier.

    • Thank you for this Laurie. Glad to know my feelings aren’t too abnormal. You hit the nail on the head. My friends and family see Eli. Strangers see Down syndrome. And with Ds they see whatever stereotypes they “know” about Ds. That’s the reality of what makes me sad. But, if people are more companionate towards him because of their recognition of Ds, is that really a bad thing? Thanks for helping me understand that it may not be.

  3. Hey Melanie,
    So many of us judge other people on their looks alone. Hair color, tattoos, piercings, clothes, type of car, on and on. First impression makes a statement. People are ignorant too, they don’t mean to be, they just are. They don’t take the time to see, or “think”, or take in the whole picture. They are too self consumed. I don’t know how anyone could see his sweet face and not react positively. But people are intimidated by what they don’t fully understand. So your face will have to try to show tolerance, compassion, love, empathy and abundant patience for people, who don’t mean to be unkind, just don’t fully understand. You have already taught us so much about love, unconditional love. Life is one long lesson. We all have much to learn about ourselves and those we share our world with. Sending you lot’s love & hugs!

    • Thanks Jouella. I know we all get judged, sometimes negatively and sometimes positively. I guess it will go both ways for Eli as well. Luckily those of us who know him, know him as Eli – sweet, lovable, brave, and strong! One day, I hope that’s how the world will see him first as well. ❤️

  4. As a parent we want to protect our kids from anything that will hurt them, reality is – we can’t – but that doesn’t matter because until we die we try! No matter if a child has DS or not, they will face struggles of stereotype, and at some point maybe even being picked on. Both of my older kids have had to deal with situations in which I was not present to handle for them (although I came close to showing up at the playground on more than one occasion) I had to be the voice of peace, shoulder for tears, endless comfort from hugs and kisses and remind my child how uniquely each one of us is made (and also how to put your dukes up but that’s another episode). Take each “situation” as they come, protect your boys as much as you feel comfortable, don’t be hard on yourself and always find that moment of mama bear growth (it will come in handy when you are en route to the kindergarten class recess with your sweats on, curlers in, on a one way mission to that four-square bully)..
    xoxo I love you Mel

  5. I totally get it. When people take long stares at Camden I wonder “can they tell?” Then I convince myself that I don’t give a darn if they can or not. I don’t care if people see it, I care if people automatically judge my son because of it. It’s so hard. I definitely want to stay in baby oblivion as well. And I agree…that extra chromosome makes our boys extra extra cute!

  6. Oh Mel, you are one of the most amazing people and mothers that I know. I can’t say why you felt that way, but I know for me, I worry a lot about the characteristics of my boys that might cause them hurt. They are not physical but they are audible and observable. They both have struggles that we deal with every day and work on, and things are improving but I find myself wishing their speech would hurry up and improve faster or that Torsten would stop having these big meltdowns. Not because I’m embarrassed or ashamed or not intensely proud of the amazing progress they’ve made. I’m terrified of someone teasing them or them getting bullied. T goes into regular public kindergarten next year. He’ll have an IEP and extra support but he will still be surrounded by a much different group of kids from different backgrounds. Up until now he’s been in a special program through our school district for kids with any sort of developmental delays. He struggles with some behavioral stuff that mostly stems from his anxiety disorder and has had a really hard time figuring out social skills. He is so sensitive and I think his current school has been a wonderful place where everyone is a little different so no one is different. He still has no comprehension of teasing or making fun of someone or being made fun of. I asked him a couple months ago and he was so confused and looked at me like “why would anyone do that?” I wish he didn’t have those problems, not because I’m upset that he has them but because I worry about how they will affect his life. If I had to guess, I’d say you felt upset at the bowling alley, that people can tell Eli has Down Syndrome, you are more worried about the effect that knowledge will have on the way those people treat him. When we still thought Torsten’s struggles were autism, I would like to say I couldn’t care less about it, but I do care because whatever he struggles with, that can make his life harder and possibly more painful. Whatever the route cause of his difficulties, it breaks my heart that he has to have those difficulties at all. I dealt with horrible bullying as a child. I can’t stand the thought of either of my sweet babies going through that. Same fears with Rowan with his difficulties. I just don’t want them to end up singled out. But Eli has a supportive, loving family. Even if he has painful moments, he will get through them with flying colors because you are teaching him how valuable his is. He will be ok. So will my boys. *hugs*

    • First off, thank you for your kind words. Secondly, you hit the nail on the head. I don’t want people to see Eli and see Down syndrome and then automatically have a preconceived notion that he is one way or the other. I’d rather people get to know him for HIM. But, it’s a blessing in some ways as well. Hopefully, people may see he has Ds and will treat him gentler, be more patient with him. Although, that’s putting a lot of faith in humanity. But that’s all I got.

      I’m sorry any of our kiddos have to struggle at all. I would never want to change anything about Eli. But, I do wish I could make things easier for him. Guess that’s my job as his mama. Figuring out how.

      You are right – our boys will be ok. Hugs cousin! xoxo

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