Our Normal

What is normal anyways? Normal is subjective. Whatever you fill your own little world with is your normal or typical, which is probably very abnormal and weird to the next person.  I’m sure it comes as no surprise that part of our normal is Down syndrome.

Since Down syndrome is A PART of our first and so far our only child, it is what we know as normal. Much of our little world is filled with Ds. Social media feeds flooded with Ds blogs, articles and pictures of my friends insanely cute kiddos with their almond eyes, and giant grins. Weekly therapy. Delayed development. Low muscle tone. Ear tubes. Sign language. Sleep studies. Surgery. Doctors appointments. ‘Therapy’ toys. HUGE celebrations for seemingly little hit milestones. The list goes on and on. Our little world revolves around Down syndrome in some way or another. It’s no wonder that Down syndrome is OUR normal!

I have absolutely no idea what it’s like to have a child that just does things when it’s time. To one day have an immobile infant and literally the next day that baby just magically figured out how to get on all 4’s and do a proper 4 point crawl. Thats abnormal. Most of you have absolutely no idea what it’s like to have a child that works so hard to learn things. A child that you have to run from one appointment to the next to ensure their development and health is on track. That’s not your normal, but it’s ours.

Down syndrome is so normal to us that once I even forgot Jaxson has Down syndrome! True story!

Earlier this summer I was holding my friends little guy who is 6 months younger than Jax. I couldn’t figure out why he was so damn stiff. To me it felt like I was holding a 2×4 and I couldn’t figure out why this kid wouldn’t relax! A few weeks later I was holding another friends little guy who is only a few months old. Again I couldn’t help but wonder what was wrong with him. This baby too was stiff as a board. I thought to myself as I was rocking with him “man, chill out buddy. Relax……..”. It wasn’t until a few days later that it clicked for me. Those babies are ‘normal’ (or typical as we like to say in the disability community)!! Seriously, I felt so stupid that it took literally a month to figure it out. Jaxson has Down syndrome! Jaxson has low muscle tone which means he’s ‘floppy’. Holding Jaxson is like holding a 30lb snuggle bug. He melts right into you. So relaxed, so ‘floppy’ and so snuggly (the best. thing. ever!). This is why those ‘typical’ babies were not normal to me.

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I seriously forgot that Jax has Down syndrome! It’s strange how our world literally revolves around Ds that now it’s not even a thought. I have a feeling that Jaxson will always be our ‘typical’ or ‘normal’ child. Alex always says “what are we going to do with a stiff, non flexible baby? They are going to be so hard to dress, change and get into that awkward car seat.”

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Down syndrome is our normal and I wouldn’t want i it any other way!

4 thoughts on “Our Normal

  1. I couldn’t agree more! I never even think about the fact that Lukas has DS. He’s the best thing that has ever happened to us and even if I got to chose I wouldn’t even dream about changing him. If you guys ever take a trip to Scandinavia let me know, I think Lukas and Jaxson would have a blast together 😉

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  2. Holly, you nailed it on the head!! Three days ago I came to the same realization regarding precious little Jaxson!! The day after getting my Jax snuggles I ATTEMPTED to snuggle with a three month old boy during my volunteer time at the Pregnancy Support Centre. That little baby was smiling and giggling BUT no quiet snuggling was to be had!! He was stiff (as you say) and so unyielding!! And even for a few minutes I quietly murmured to him to calm down and take it easy….even shushing him!! And then it dawned on me what his “problem” was!! 😏 I was the absurd one!

    Jaxson has brought such calming and peaceful love into our family!!!! He’s PRICELESS!! 💙💛😍

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  3. I have so enjoyed reading your blog and can (in a way) totally relate to your lives. I may not be a DS parent but I am a DS sibling. My sister is older than me so I know no different but have heard my parents talk of their struggles and triumphs. My sister just turned 50 this year and I would have life no other way. She makes us appreciate everything about life and makes us look at life different than others…better. I love that I can follow your story and watch Jax grow x

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