A Day In The Life of Down Syndrome

James halfway through his 0.321 mile run
I realized true strength comes when you persevere and appreciate life instead of complaining about all the things that didn't go your way. Letting go of trying to control the outcome and just living in the moment didn't bring me to where I had initially dreamed of going, but rather a place that will make me a stronger and better person. -Aliza Lapierre

In honor of World Down Syndrome Day I thought I would give a little peak into a day in the life with Ds. Keep in mind James is a nearly 3 year old, so this is not just a day in the life of a child with Ds, but a day in the life of a toddler. While James goes through more on a daily basis than a lot of kids do I think a typical day for James is a lot more like a typical day for any other toddler. 

Each morning I quietly raise the blinds on his window as he sits up quietly in his bed. I savor these first few moments every morning. Its quiet...James is quiet...he's peaceful...sometimes this lasts for a full 5 minutes...

Good morrrrnnnning Rocky Mountains! I cheer out and a smile explodes across his face as he lifts his arms up, eyes twinkling in the little bit of light streaming through the window. Are you ready for a woooonderful day? I question as I turn off his oxygen tank and remove his cannula. Then as soon as I reach out my arms he's engulfed me in a neck hug that I will never be able to get enough of. I hope that our little morning ritual will last forever. 

And then the peace is over. No, no, no James calls out as I try to give him his meds. How about yes? I question back, he smiles and signs yes reluctantly taking his meds. On the weekends we sometimes cuddle on the couch for another 10 minutes while he drinks his morning milk...okay this happens maybe once or twice a month, but in my head I like to pretend this is how every morning goes. More often James runs around yelling no and throwing toys as I try to chase him down. 

Several mornings each week are punctuated with various therapy appointments and James well, sometimes he cooperates but more often he doesn't anymore. After over 2 years he has finally taken to his EI speech therapist and he'll have fun with her. He has a new private speech therapist that we're still working to get to know so that doesn't always go well. And some days we do therapy at daycare, which is again hit or miss. I try to schedule all his therapy in the morning since those are when he's the most cooperative. Unfortunately I don't have as much say over doctors appointments, but those are getting less frequent, usually 2-4 trips to Children's a month, not counting therapy. 

On just daycare days we drive down the hill rocking out to Let It Go, no not Elsa, but rather Michael Franti...James actually is maybe the only kid who could care less about Frozen. But put on some Franti and this kid will dance like a mad man and he's even starting to sign-a-long. I have no idea what anyone passing us might think of the sight as I sign-a-long and James dances...every morning non-stop for the 20 minute drive. James has always handled drop off fairly well and usually charges straight to one of his two favorite teachers wrapping them in the same neck hug he gave me when I woke him up. 

Because I have now forgotten to bring his lunch on enough occasions (thank you Whole Foods for your boundless supply of gluten free products) I now keep sunbutter and jelly and a loaf of gf bread in my freezer at work so I can make a quick sandwich and run it back to daycare on the days I forget. This seems to happen a couple times a month, but at least daycare is close. 

And then you begin to understand why I run after work so much. James will be ready to go at 4:30 whether I'm there or not. I think he's getting more used to my spring/summer schedule where pickup inches closer to 5:30 every day. As soon as he hears me he charges straight for me wrapping me in another neck hug. I usually have to carry him out of daycare because he's embedded himself in my collarbone. As soon as we get into the car any glimpses of that sweet little boy evaporate. He immediately signs juice followed by incessant whining, no matter what you do you can't do it fast enough. I have a water bottle of juice (because he refuses to drink juice from anything else) ready and waiting. I have also taken to keeping crackers in the car for him on the chance that he is extra hungry and we can't make it home without a snack. Approximately 6.3 meltdowns and 25 minutes later we arrive home where ready or not James is racing to the table and climbing into his chair. James is usually in tantrum mode at this point. An hour later, yes that's how long it takes to stop throwing tantrums and then slowing, very slowly eat dinner, we clean avocado, sour cream, pasta sauce of whatever other goodness we had for dinner out of hair, curtains, booster seats, rugs, walls...basically anything within a mile radius of the kitchen table. Exhausted and deflated I pray we can pass the next 30 minutes or so quickly. 

James only gets a bath every other night because his skin is too sensitive to handle nightly baths, but thankfully he doesn't need a bath for his night time ritual. Oh no as soon as we have gotten on pjs, brushed our teeth and taken our meds James runs straight for the couch signing run, picks up the remote control and desperately tries to start his Leadville video. Oh how we have created a monster. I swear he can hear that first chord from miles away and immediately knows what time it is. After a cup of milk and some good running its finally bedtime. And then time to repeat it all over again. James struggles when his routine is broken so even on the weekends we stick to the daycare schedule for meals, naps etc. and we rarely break routine. Also why there isn't a whole lot of variety to our days. This is our day...every day...but its certainly not a bad way to spend your days.

There are a lot of things that nearly 3 years old do that James doesn't quite do, he doesn't jump or walk up stairs, he doesn't talk or feed himself with a fork. But he can throw a tantrum with the best of them, he carries his dishes to the kitchen after every meal, he puts himself to bed, he tells a great story, he loves to give hugs and kisses, and he understands more than he lets on. This little kid who has created so much chaos and catastrophe around our house has taught me more about strength and love then I ever thought there was to know. He works his butt off to learn things and accomplish new tasks, he is so proud of himself when he does something new and he loves like its the only thing there is. Maybe he's actually the one that is smarter than everyone else. Without courage, strength and love what do you really have. At 2 James might just have it all figured out. 

Full disclosure, as soon as I finished writing this James woke up from his nap and within 10 minutes had pooped in my lap...potty training fail. A few minutes later I hear whining from the sliding glass door as James tries to play with the dog through the door desperately trying to get outside, while I hear James just bit my lip from Dan. Ah life with a toddler...

Additional phrases conversations often heard in our household...

"no" "no what?" "no"

"stop pulling the dogs ear, no, no hitting the dog, no not his eye either, no gouging the dogs eyes out"

"no the potty is in here..."

"3, 2, 1...boom...go..."

"help with what? you don't know, well I can't help you if you don't know what you want"

"cheese? you want to eat cheese" "no" "what do you want with cheese?" "no"

"hot" "yes mom's coffee is hot"...in goes the cup of milk "yes hot coffee on mom's lap"

"oh thank you for the hug, oh yes great hug...can we eat now though?"

"sit please...sit...turn around and sit..."

Week March 16 - 22

Miles Running: 56.5
Hours Hiking and Running: 10.5
Vertical: 8,475

Monday: OFF

Tuesday: 10.1 miles: after running the car to the dealership and back (literally) met Sandra at Apex for a good run

Wednesday: 6.9 miles: 7x1.5 min hill sprints at the top of Apex, felt good on sprints, last one the fastest

Thursday: 9.0 miles: met Sandra for another good run at Green, so nice to run on nearly dry trails

Friday: 15.0 miles: sluggish run in 3:21 at Falcon, haven't climbed that much in awhile 

Saturday: 7.5 miles: Bear Creek WDSD run with the boys

Sunday: 8.0 miles: Bear Creek with the boys


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