Finding Joy Each Day ~ Each Step ~ Each Dance

Sometimes I truly think stars align, Fate knows what it's doing & you are meant to me in an exact spot-at an exact moment-for an exact reason...Whether that's meeting the love of your life, winning something for being the 100th shopper or experiencing a moment you didn't even know you needed...


Take today for example...


Craig, Pip & I had a beautiful moment...A moment that could have easily not have happened...We could have lazily stayed a few extra minutes in the quaint little seafood restaurant we were having lunch at...Had a coffee or another delicious glass of sangria...We could have walked up a different street in search of the coffee we missed out on...We could have decided to stick closer to home instead of braving the rain & walking around downtown...We could have kept Noal out of daycare & hung out with him, instead of having a much needed date together...



A million different things could have happened to not have us in this exact moment, I believe we or at least I really needed...But, the stars aligned & it happened as if Fate knew it should...It was nothing extraordinary & it may seem simple to y'all, but for me the moment took my breath away...


As we left the restaurant hand in hand, we walked through a park where we saw a brass band setting up to play under a pavilion...As much as we wanted to stay, we continued to walk {rain & my hair sends me into a panic & our parking meter was about to run out} but we got caught up in a group of people- From what seemed like out of nowhere, a group of 20+ adults with Down syndrome filled the park...All of a sudden that park & that moment was where Craig & I needed to be...


The band started to play, I saw a few look at each other & wink with delight & then dancing, beautiful dancing right in the park with nothing but utter joy on their faces...I was frozen in time for a few moments- Just watching it all, trying to get close, talking to a few about Pip, hoping for an invite to dance with them...


I felt nothing but happiness watching, but as Craig & I walked away I was overcome by emotion...I am not sure why- I think it has to do with the whole "spectrum" of Down syndrome- Not knowing where Pip is going to fall within that...Will she be the joyous one dancing if she hears a brass band in the park? Or will she be the one who couldn't speak & needed help walking? 


Since Pip was born words like "wide spectrum", "variability" & "severity" have been thrown around in regards to Down syndrome from numerous doctors, nurses, books, other Ds parents, etc...It's always been in the back of my mind, wondering where Pip will fall on the "spectrum"- Finding hope from one doctor who says if Pip has this or that than she'll fall here- If she doesn't have this or that then she'll fall there...It's all a bit overwhelming & confusing...


As I watched the group, with people scattered all over this "spectrum" {I use the phrase without knowing medically, intellectually or physically anything about any individual- just based on what I could see} I found myself just deeply hoping above anything that Pip would be happy...If she ended up being like the young man with the top hat, tapping along to the beat but not vocal or the older lady who came over to us & had to make sure Craig was indeed Pip's dad, or the one I hoped would invite me to dance but who instead kept waving & even blowing me a kiss...Whoever she happens to be, wherever she happens to fall on this much talked about bloody "spectrum", I just want her to be happy & know that she's loved...So, very, very loved...





We won't ever really know where Pip falls until we're there in it...When she'll hit milestones...If she'll walk-talk or be able to take care of herself...And I guess at the end of the day it's all about day by day...Taking each day, each step, each dance if you will, one day at a time & finding joy wherever Pip falls...



19 comments:

  1. Here's the thing: we ALL fall on different places on the spectrum of life, regardless of whether we have a disability or not. It is hard to imagine the future and try to figure out where your kiddo will be, especially when she is still a baby. I won't say that I didn't do that with Owen because I know that I did. But at some point, probably around 8 months, I just stopped trying to fast forward to the future. I began hanging out with other families of littles with Ds near Owen's age and it was great to see all them interact and be their own little selves. I learned to just let Owen be because he needed to find his own way. Pip will find hers. You are giving her experiences that will shape her existence. And no matter where she falls on that spectrum, she will do the best that she is capable of doing and that's all you can ask for.

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    1. Anonymous2.7.13

      How true this is. We are all part of the human spectrum.

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    2. I could not agree more with this. Hanging out with other families and joining the online community was a big thing for me as well. Pip will definitely know she is loved, and I think real, deep, fulfilled happiness is all any of us could ever ask for.

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  2. Wow, what an amazing moment to have experienced! When Samantha was 1, she and I attended our local ARC picnic. I wasn't sure what to expect, had never met adults with Down syndrome before. And I was so happy we went. It was just what I needed, and I bawled the whole way home, so happy to have met so many amazing people.

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    1. It is amazing eh- how it touches you? Thanks for sharing...

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  3. Muls2.7.13

    Each and every time I read your blog, I shed a tear, sometimes one, sometimes many... Tonight took the cake...so beautifully written xoxo

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  4. Anonymous2.7.13

    Yep, you were in the right spot at the right time! In the end where she falls on that "spectrum" really doesn't matter as you'll love her more each and every day regardless. I always wondered where my Brandon would fall on the "spectrum" too. At 19, he's quite happy with who he is and he has a darn good life and is loved way more than he'll ever know. (He loves unconditionally in return and gives hugs and tells me "I love you too" every day!) He seems to have no clue that he has DS or that he's "different". He's always been healthy other than the chronic ear infections and usual "virus of the week" when he was younger but rarely gets sick at all anymore. My hopes for him continue to be that he is happy and healthy and isn't that what we want for all our kiddos? In spite of having those sad times, I still do on occasion, you'll find that you have the best of both worlds with your babies and life, and people, are good! I enjoy following your journey with your sweet Pip! Keep sharing!

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  5. Anonymous3.7.13

    What a beautiful experience for you and Craig. See---things do happen for a reason! Jill

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  6. What a wonderful post and all the replies. I do truly believe that things happen for a purpose, if we can just be open to the possibilities, find out what is ours to do, and then let it unfold. After all, deep down, Pip is just your and Craig's loving and much loved daughter (and sister to Noal). There will be difficult things on the way and I think it is good to share those times too. (like the other day) It's also very helpful to others. But whatever happens, we always have to choose the best way to handle things and to accept that our children have their own way and perspective on handling things too. Lots of love to you all, and all who are sharing this.

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    1. I too Alison believe it all happens for a reason- Every moment....And that's exactly what I'm trying to do- Be open to it all...thanks for your comment...It's beautiful...

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  7. Anonymous3.7.13

    Nicole Godin Your writing is so heartfelt, beautiful and uplifting! I look forward to your posts, because no matter what kind of day I have had, good or bad I always feel lighter after reading... So thank you for that 😊

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    1. Thanks Nicole- So happy to hear this!!!! Gives so much purpose to Happy Soul Project when I read something like this...so THANK YOU...

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  8. They say to take it one day at the time... I say ok, but we are going to enjoy every single day of them!...

    Down syndrome doesn't define our kids neither our families, our kids redefine everyday what down syndrome is about!

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  9. As a parent with an adult child with Down syndrome this post makes me emotional as well.
    Thank you for sharing it and seeing the beauty of that moment and here's to the many other lovely moments that will come to you if you keep your eyes open :)
    Best Wishes,
    Mardra

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    1. Mardra thank you for sharing & your comment.... I hope for many more moments like this too!!! My eyes I promise will always be wide open....

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  10. We've been told Little Man was high functioning, then low functioning, then moderately impaired - back to moderate to severe. St. Patty's Day he will be 13 yrs old when they gave him 7-10 days at birth. Unfortunately, while celebrating this milestone with him and the family, I also get to spend part of the day in his Individualized Education Plan Conference. I never leave these meetings without tears, as it is so hard to hear all about what he isn't, what he can't do, where he should be to where he is...I relish the rest of the year when he can be my Little Man and not a progress meter on his birthday! There are days I am actually jealous of his ability to just be happy. Love my Little Man.

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  11. Anonymous15.11.14

    Laura, i have too. High, then moderate, then low, back up to moderate.

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